Advice

Ask Ada: My Partner Doesn’t Understand I’m Disabled

Plus: how to adjust your friendships in the face of hearing loss.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.


Dear Ada,

I started dating a lovely man late last fall. We’ve become exclusive, and I see a long-term future with him, except for one problem. He’s not very respectful of my physical limitations because of my invisible disability. I disclosed that I have an autoimmune disease when we first met, and it’s something we’ve always talked about, but now that the nice weather is here, he’s always wanting to go out and do really active outings, like hiking or surfing, which are very hard for me. He always says things like, “You’ve gotta push through the pain,” or “Mind over matter.” I think the problem is that during the winter my body is slightly better rested and there are less physical activities to do. Because of this, he never really saw me struggle or deal with the pain that comes from my condition. What should I do, call it quits now? I don’t think I’ll be able to keep up with him physically.

Suffering In The Summer

Dear Suffering,

Good news: your relationship is not doomed. You do not need to call it quits, and you also do not need to learn how to keep up with your partner.

I think you’ve gotten to the root of the issue when you mention that your partner never had the opportunity to witness how your autoimmune disease makes you physically struggle because you were feeling mostly healthy, or at least less symptomatic, at the beginning of the relationship. Even though you may have discussed your condition at great length, it seems as if he only sees a healthy version you, which is, of course, the beauty and downfall of an invisible illness.

What you need to do is have a serious, honest conversation with him—and do it at a time you have his full attention, not after he suggests another active date. In this conversation, do two things: explain your limitations and point out his lack of empathy.

In this conversation, do two things: explain your limitations and ask him to address his lack of empathy.

First, let’s tackle his approach for getting you to participate in his active lifestyle. Basically, it sucks. Since you didn’t say otherwise (and because you called him lovely), I’m going to assume that he thinks he’s helping to motivate you, and not that he’s purposely talking down to you. However, his ableist “motivation” leaves you feeling forced to do something you’re not capable of, negates your experience as a person with an invisible disability, and makes you question your future together. You need to explain to him that the way he is speaking to you is not helpful, and certainly not appreciated.

Also, explain in detail, what it’s like to live with your condition. Describe how your symptoms may come and go, and what environmental conditions, like warm weather, may trigger them. Tell him what the pain feels like for you. Finally, be clear on your limitations. If hiking and surfing will always be “no”s for you, say that. If you’re willing to read outdoors or get your suntan on while he hikes and surfs with nearby, offer as a possible middle ground. It’s fine to negotiate time together so the experience is something you’ll both enjoy.

In the same regard, don’t assume that you must participate in these activities at all. Well-rounded couples have lives that take place outside of the confines of their relationships. Tell him that you appreciate his wanting to involve you in his active lifestyle, but that it’s better to enjoy these interests with his friends.

How Do I Let My Friends Know I’m Losing My Hearing?

Photo by Brodie Vissers from Burst

Dear Ada,

I’m losing my hearing. For good. I knew this would happen, as it’s been diminishing slowly for years, but my doctor warned me that I may start having more rapid loss, and I fear I’m there now. I’m at peace with this as best as a person can possibly come to terms with such a cruel loss. Here’s my problem: all of my close friends and family want to force “hearing activities” on me like concerts, lectures, musicals, and even local bands, when I’d honestly just prefer to listen to my grown children talk closely to me and grand baby babble. How do I turn down their offers? I’ve tried to kindly decline but I just feel like it’s being pushed on me.

The New Quiet

Dear Quiet,

Being “kind” isn’t helping you. Instead, be direct.

If anything, your kindness is encouraging your friends to keep trying. If you simply tell someone you aren’t available on the day they invited you, they’ll just suggest something else on another day.

Instead, explain to your friends and family that while you appreciate their offers, you are rapidly and significantly losing your hearing, and have made the decision to no longer attend any activities like the ones they are asking you to attend.

It isn’t your responsibility to make anyone else understand why you feel this way, but it is your job to make your decision clear to the ones who need to hear it.

It isn’t your responsibility to make anyone else understand why you feel this way.

Most importantly, let your children know how important it is for you to be near them during this time of transition. Don’t wait for weekly dinners or other random celebrations. Tell them how much it means to you to hear their voices while you can, and ask to spend as much time with them as possible.

There is something else that must be addressed—have you given any thought to how you’ll manage your relationships once the hearing loss is more complete? One reason why your friends and family may be trying to “force” activities on you now is because they’re anxious that they won’t know how to communicate with you in the future. Again, it isn’t your responsibility to make them feel better about these situations, but if you can show that you aren’t trying to rid your life of them, you’ll help to put them at ease. You’re losing your hearing; you don’t have to lose your support system.

One reason why your friends and family may be trying to “force” activities on you now is because they’re anxious that they won’t know how to communicate with you in the future.

I don’t mean to make light of this, either. Of course things will change. You may lose some friends who are not patient or willing to put in the effort to communicate with you as you evolve. In the meantime, while you enjoy the time with your family and your hearing loss is more significant, suggest writing back and forth with your friends. Use email, or have more fun with it and treat each other like pen pals by sending real letters in the mail. Share stories of fun times you’ve had in the past. Ask questions of each other to add a new dimension to your relationship.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: IBS At The Office! How Can I Deal?

Plus: what to do when people at the office start triggering your asthma or allergies,

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.


Dear Ada,

I’ve recently been diagnosed with Irritable Bowel Syndrome, and I’m pleased to finally have a diagnosis because I’ve been suffering with this condition for quite some time. It’s even complicated my work situation. One of my coworkers complained to my boss that I’m taking too many bathroom breaks, and since then, my boss has been monitoring my bathroom usage. I try to keep my trips to the restroom at a minimum, and to use the facilities as quickly as possible, but it isn’t easy, and I’m worried this is putting my job in jeopardy. Should I tell my boss about my diagnosis now that I have it? I feel so uncomfortable to have to explain my illness to him, but I also don’t want to lose my job. This is causing me a lot of anxiety, which is just making my IBS worse. What would you do?

“Boss makes a dollar, I make a dime. That’s why I poop on company time.”

Ever hear that jingle in your workplace? Probably. It implies that employees waste time because, well, they can. And some do.

But in your situation, you’re being monitored for bathroom activities that are vital to your physical well-being. You can’t control when you need to go, how frequently, or how long it will take.

I understand that it’s awkward to talk about this, but it sounds like your supervisor might think you’re taking advantage of “break” times, spurred by the complaint from your peer. While employers do have the right to reasonably restrict bathroom usage  (keyword here being “reasonably” and how this interpreted will vary depending on the type of job as well as any state laws), they also have the responsibility to offer you accommodation for any disability in accordance with the Americans With Disabilities Act (ADA), if the company has more than 15 employees.

[Employers] have the responsibility to offer you accommodation for any disability in accordance with the Americans With Disabilities Act (ADA).

Do you have a Human Resources department in your company? If so, schedule an appointment with them so you can both disclose your condition and ask for accommodations, such as the ability to take more frequent breaks or to move your workstation closer to the restroom. Request that your HR department alert your supervisor to not monitor your bathroom usage. Your medical conditions are protected information, so HR should not be disclosing any of this information to your supervisor, simply informing them of the accommodations as appropriate.

If you don’t have an HR department, I’d suggest meeting with your supervisor directly. Let him know about your diagnosis and that you’re willing to provide documentation from your doctor, but that you need to take more frequent bathroom breaks than the average employee. Ask him to stop monitoring your bathroom activity, and assure him you’re putting in your max effort while at work. Oftentimes, an honest —albeit awkward—conversation is all that’s needed to change work situations to benefit both parties. Once you get this conversation out of the way, you’ll find that you’re less anxious about handling your IBS at work as no one will be monitoring you, making the situation easier to deal with physically and mentally.

Three women gather around a desk in an office to consult a laptop.
When you have asthma or allergies, coworkers’ perfume choices can be a health problem.

My Co-Workers Reek, And It’s Killing My Asthma!

Dear Ada,

I can’t breathe at work. Between the smell of everyone’s food, perfume, and the cleaning products, I spend the day wheezing and my chest feels tight when I leave for the day. My asthma and allergies have been unmanageable, and I suspect it’s because of this. It’s as if I slightly recover at home and suffer all day at work. A while back, I spoke with the management and they sent out a notice requesting everyone limit the use of personal products and to keep all food in the cafeteria and not to eat at our desks. That helped a lot, but I feel like everything is back to how bad it was before. What should I do?

It’s time to talk to management again.

The great news is that your company was previously receptive to your issues and took the steps required of them in the past to assist you in easing your medical issues. What’s likely happened is that all the employees fell back into their own bad habits. Now, they need another reminder to check their behaviors.

When you talk to management, let them know how much the changes improved your experience the last time they assisted. Request that reminders to staff get sent out quarterly. On top of that, ask if they’d be willing to schedule walkthroughs of the workspace shortly after the reminders get sent to ensure staff are complying.

No one wants to go to work feeling concerned that they’ll be struggling to breathe while they are there. If you present your case calmly, and with suggestions on how to manage the problem, your management team will likely respond as well as they did last time.

Another option is to ask for accommodations, such as your workspace to be moved to an area that’s better ventilated.

Another option is to ask for accommodations, such as your workspace to be moved to an area that’s better ventilated.

Finally, if the situation remains the same after speaking to management, you might want to consider asking if they’d be willing to make your position into a remote job. Offer to come into work for any important meetings and trainings, and explain that you are asking as a last ditch effort before looking for employment elsewhere.

Know that your employer is not required to change your job into a work-from-home position, but this request might make them understand the severity of your issues, as well as seeing that you’re on the verge of leaving. The effort (and expense) required to fill your position and train a new employee might be enough for them to seriously consider your request.



Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: Pre-Eclampsia, Postpartum, and Desperate. Help!

Plus: what to do when you know someone's cancer diagnosis, but you're sworn to secrecy.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

Dear Ada,

I just recently had a baby girl, and everything went wrong in the last few weeks of my pregnancy. I developed pre-eclampsia and was bedridden and then the birth ended up being an emergency c-section. I’m only a couple weeks postpartum, and I’m still in so much pain and working to manage my blood pressure which has improved since the delivery but is still a problem.

But I’m not getting any help. I feel like I’ve been split open (which, I guess I have) and I feel like all I do is bleed, leak breast milk, and want to cry. My family and my partner’s family always say they are willing to help, but nobody actually does. My partner is usually up with me all hours of the night, but because of this, he has been so grouchy with me, and honestly, I think he could do more. I need help, but I don’t know how to get it. What should I do?

Congratulations on the birth! The days and weeks (and, let’s be honest — months) after delivering a baby can be such a trying time in the best circumstances. Dealing with pre- (and potentially post-) eclampsia while recovering from a major surgery in addition to these newborn days can be utterly overwhelming.

You are absolutely right in that you need help, and it sounds as if you do have a support system who can help give it to you. The disconnect here is simply that your family and your partner’s family don’t know exactly how to help you. When they don’t see an immediate need—such as changing the baby’s diaper for you—they assume that you don’t need them.

The best way to handle this is to be direct with both families — and be specific. Know what it is you really need help with.

The best way to handle this is to be direct with both families — and be specific. Know what it is you really need help with. In your case, it might be driving you to doctor’s appointments, or simply sitting at home with you and passing you the baby when she needs to be fed so you don’t have to continue to stretch your wound. You may need assistance with household tasks like cooking and cleaning. You simply might need to take a shower or get more sleep.

When you determine what you need, initiate a conversation. Say something like:

“Thank you so much for your offer to help out during these newborn days. I’m finding recovery to be harder than expected, and I’d love to take you up on your kind offer. I’d love any help I could get with (insert your requests here).”

If you’re feeling anxious about speaking up, send that message as an email or text. If you’re feeling more confident asking for assistance, call your family members now. Find out how soon they can come over and then just be receptive to their assistance.

On a separate note, your partner is likely struggling because he sees how hard things are for you. Yet, he feels helpless on how to make anything better, especially if the baby relies on you for nourishment. At this point, he’s basically on holding and diapering duty.

It’s wonderful that your partner is present with you when you’re up at all hours of the night, but it sounds as if you both need some sleep. Harvard Health Publishing reports that lack of sleep can lead to depression, anxiety, and a slew of other mental and physical health issues. His overall crankiness might be because he’s not well rested. Can you stagger your sleep schedules so that the both of you are able to get a little more rest? Maybe you can get the more concentrated sleep in the first half of the evening (even if this means going to bed shortly after dinner) while he is in charge of the baby and then you can switch halfway through the night?

Your husband is in the trenches with you on this, but he doesn’t know how to “fix” it. Make your needs clear.

Similar to your families, your partner might feel as if he doesn’t know how to help you. Sure, he is in the trenches with you on this, but he doesn’t know how to “fix” it. Make your needs clear. If you need him to change every single diaper because leaning over rips at your C-section stitches, then tell him. This is a transformational period in your relationship. He can’t be left to guess at you want from him. Asking for what you need now will improve your communication as parents. However, it’s also his responsibility to step up to the plate on his own. You aren’t his mother. Encourage him to take action without instructions from you.

And remember, you’re all in this together. It takes a village to raise a child. If people are offering to help, accept it. Your body needs to rest and recover from the trauma it’s experienced so you can be the healthiest mom—both physically and mentally— for your little one.

Photo by Nicole De Khors from Burst

My Grandfather Has Cancer, But I’m Not Supposed To Know. Help!

Dear Ada,

I somewhat accidentally just found out that my grandfather has cancer and is refusing treatment. The prognosis doesn’t look that great and his doctor has given him less than a year.

My mother let it slip in conversation when she was telling me about some of the stressors in her life, but I know this was supposed to be a secret, and now I feel like I have all this knowledge heavily weighing on my shoulders. Plus, I can tell my mom feels anxious about the slip. She says she feels guilty that she’s placed this burden of knowledge on me, but she’s also very anxious I’ll tell my siblings, and my grandfather has made it extremely clear he doesn’t want anyone beside her to know.

My siblings love our grandfather, but honestly, they don’t spend enough time with him. Part of me wants to tell them so they can make an effort to make memories with him before he passes, but I know breaking my mom (and I guess grandfather’s trust) would be a huge deal. I’m stuck. What would you do in this situation? I feel like I lose either way and my anxiety is beginning to spiral out of control here.

The first step to getting unstuck is to look inward and analyze what precisely is making you feel this way. Your anxiety is spiraling—but why? Is it because you don’t know whether you should keep the secret or not? Will your anxiety dissipate once you commit to a decision? Is it the guilt of knowing something your siblings don’t that’s bothering you? If so, will telling them reduce your symptoms? Or, is your anxiety brought on by sadness inside you by knowing you’ll face a major loss in the near future?

Answering some of those questions will help you determine how to proceed. You may decide to keep the secret and seek grief counseling to help you process your feelings. Or, you may choose to sit down with your mother and explain that you cannot bear this knowledge alone. The truth is, while it was an accidental slip on her part, it isn’t really fair to ask you to keep a secret like this, especially if you’re completely uncomfortable with it. She will need to inform your grandfather that she shared his news, and because of this, need to also tell the information to your siblings.

The first step to getting unstuck is to look inward and analyze what precisely is making you feel this way. Your anxiety is spiraling—but why?

But before you make any decision, I want you to take a moment to consider why your grandfather is asking for this privacy.

It’s likely because he wants his family to treat him as someone full of life and not someone who is dying. He wants you all to look at him how you always have, and not with a sadness in your eyes. He wants to live his last days on earth and not be reminded that he is dying.

If you’re willing to keep his secret, know that there is a way you can involve your siblings without telling them what you know. If you all live close to each other, invite them to come with you and visit him. If you’re far away, use your phone to Facetime with your siblings. You don’t need to make a big deal out of anything. Spending time together is all the counts in his final days. Here is where the memories are made.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: When Is It Okay To Help A Disabled Person?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag. What’s The Best Way To Offer My Help To Disabled People? Dear Ada, I’m a commuter and spend a huge amount of […]

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

What’s The Best Way To Offer My Help To Disabled People?

Dear Ada,

I’m a commuter and spend a huge amount of my time daily on public transportation. I regularly see people with disabilities also accessing public transportation, and sometimes, I wonder if I should offer my assistance. For example, there’s a blind woman on my train who uses a support cane; yet all of the other passengers rush past her to get on the train. Another person I see on occasion who appears to be hard of hearing looks like they’re sometimes confused as to when their stop is coming. Should I ask them if they need help? Should I just start helping? I don’t want to insult them, because they’re obviously managing on their own. I just think that we could all use help, and I don’t mind stepping up to offer help. Should I, or shouldn’t I?

Sincerely, Conflicted Commuter

Dear C.C. —

Asking to help someone if you have genuine intentions is never wrong — ever. But before you offer your help, take a moment to check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled. 

For example, the person you mention who is deaf or hard of hearing probably does know where their stop is. They’re counting and watching for each stop on their route, and as long as everything is going forward as expected, they can manage fine without assistance. They don’t need your help, and offering it might actually have the opposite effect, confusing them when they are getting along just fine.

So when might this person need help? When something happens out of the ordinary which they can’t hear. For example, imagine a scenario where a train needs to skip a stop, or is being rerouted, and an announcement is made over the intercom. In that scenario, you should absolutely offer them your help. 

When you do feel like you should offer your assistance, it’s imperative you ask permission of the person first. A simple, “Would you like a hand with that?” or “Do you need any help?” is the easiest way to start the conversation. If your offering help to someone who is deaf, make the gesture of what you’d like to do, and then look to their face for approval.

Check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled.

If the person says no, then smile and go on with your day. If they say yes, then let them tell you what they need from you. For example, the blind woman may ask you to take her arm and guide her onto the train. Or, she may simply want you to tell her if the car is too full to enter at this time.

Someone may agree to accept your help, and then not instruct you how to proceed. In this case, explain everything you’re doing before you do it. For example, say to the woman who is blind: “I am going to stand to your right and block the individuals on my side from rushing past you. Please let me know if you’d like me to take your arm and help guide you into the train or if this is sufficient.”

By explaining your actions before taking them, you’re giving the person you’re helping the agency to accept what you’re suggesting or request you do something differently.

The most important thing to remember is this: Offer help to a person with disabilities the same way you would for an individual who is able-bodied. Be genuine, be sincere, and lead the conversation by asking for their permission first.

A depressed man with a man bun looking sad.
Photo by Matthew Henry from Burst

How Can I Reach Out To Someone Struggling With Depression?

Dear Ada,

My adult sibling was diagnosed a few months ago with depression and anxiety. He told us all about the diagnosis, but my family isn’t really the close-knit, sharing type. So, when he mentioned it at a holiday party, everyone kind of acknowledged what he was saying, but then moved on with a different conversation. My best guess is that no one has really followed up with him, mostly because we’re all a bit emotionally-naive in my family — myself included. I’d like to be better, and I want him to know I’m here for him. Can you teach me easy ways to reach out to him. Remember, this is awkward for me, and will likely be awkward for him to receive the help.

Sincerely, A.S.

Dear A.S. —

It must have taken a lot of courage for your brother to speak up and share his diagnosis with you and your family. It’s so nice to hear you’re stepping up to show you care, even though this isn’t exactly the kind of conversation that is easy for you.

You mentioned that your brother shared his condition, but you didn’t say how he’s handling everything. Is he seeing a therapist? Find out, and encourage your brother to do so if he is currently trying to manage on his own.

If you’re feeling too uncomfortable talking to your brother about everything, remember that you can always initiate the conversation via text, email, or a social media message. A simple note praising him for sharing his struggles and letting him know you support him is a great first step.

Not sure what to say? Try this:

“I know it’s been a little while since you told us you were diagnosed with depression. I wanted to let you know that I’m proud of you for speaking up, and that I’m here for you if you need anything at all.”

Do your best to support him in the way he needs, and not what you think he might need.

When he answers, ask him this question: “In what ways can I support you?”

Depression manifests differently in each person, and because of that, it can be tough to know what kind of help he needs. Hopefully, he is aware and is able to relay that to you. If so, do your best to support him in the way he needs, and not what you think he might need.

If he’s not sure how you can support him, the best thing you to do is be a constant in his life. Because you’re already concerned about being vulnerable with each other, just worry about being present. Email him funny GIFs ask him to hang out with you more often.  It’s not your responsibility to be his doctor or therapist, so take that weight off your shoulders, and instead, just be there.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: Will I Ever Feel Normal Again, Post Illness?

Plus: how to recover from addiction while maintaining your privacy.

I Just Discontinued My Meds. What Now?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

Dear Ada,

I have recently tapered off of the medication Zoloft which I was prescribed for anxiety. There were so many side effects to this medication, at the end of the day I felt like it was better to deal with my anxiety than take the medication. It has been a little over a month since I have stopped taking it. How long will it be before I feel like I am back to normal?

Regards,

Nervous Nellie

Hi Nellie,

Before I address your question, let me start with a disclaimer. I am assuming that you have gone off your meds in consultation with your physician, but if not, your first step should be to give them a call. No one should take themselves off a prescribed medication without consulting their doctor first.

With that out of the way, let me answer your question about when you will start feeling ‘normal’ again.

There is no normal. I wish I could tell you that you’ll feel better in three weeks, and that is that, but I can’t. What feels normal to me may feel like euphoria or hell to you.

I’m guessing that what you mean by “normal” is that you simply want to feel like yourself again. Many depression and anxiety medications are known to cause either insomnia or vivid dreams, decrease sexual desire, or just generally make you feel “different”. If these issues were a concern for you while taking the medication, then know that most people return to their baseline after being off the medicine for a short time.

Many depression and anxiety medications are known to cause either insomnia or vivid dreams, decrease sexual desire, or just generally make you feel “different”.

But there’s something else I want to talk about — antidepressant discontinuation syndrome.

I’m so happy to hear that you took the time to taper off of the medication, instead of stopping cold turkey, which could be dangerous to your mental and physical health. However, even with a physician-monitored tapering schedule, some people experience discontinuation symptoms, which can mimic the feelings of anxiety and depression (among other physical symptoms, such as dizziness, digestive problems, sleep issues, and restless legs).

If you’re feeling any of these symptoms, know that they will pass. It doesn’t necessarily mean you’re experiencing a relapse, even if it may feel like it.

Harvard Health Publishing reports that “Discontinuation symptoms emerge within days to weeks of stopping the medication or lowering the dose, whereas relapse symptoms develop later and more gradually.”

To determine if it’s a relapse of discontinuation symptoms, your doctor may suggest taking a low dose of the medication again. If symptoms disappear quickly, it’s a side effect from stopping the medication.

Either way, it’s important you stay in communication with your physician and report these symptoms to them, so they can help you get back to a place in which you feel comfortable without medication again.

And I don’t want you to feel like you have no control in this transition, either. There’s a lot you can do to help yourself get back to that normal. At this point, it’s important to stay in therapy and reach out to your support system. Getting physical might make you feel better quicker. Exercise

The same Harvard article says, “Exercise makes serotonin more available for binding to receptor sites on nerve cells, so it can compensate for changes in serotonin levels as you taper off SRIs and other medications that target the serotonin system.”

So take care of yourself, Nellie. Be patient with the changes in your body, move your body to help heal your mind, and trust that you’ll find your new “normal” soon.

P.S. Fellow readers — remember that no med changes should ever be done outside the care and supervision of your physician.

How Do I Stay Sober While Maintaining My Privacy?

Dear Ada,

It’s the “warm” celebration season, meaning wedding and baby showers, graduation and pool parties, and weddings will be taking over my weekends. I actually love happy life moments, and spending time with friends and family is exactly what I want to be doing. Here’s the problem. I’m newly sober. How do I explain why I’m not drinking to my family, friends, and colleagues during this celebration season in a way that is direct enough to get them to stop badgering me to drink with them, while still keeping a bit of privacy so I don’t have to wear a shirt that says “Alcoholic in Recovery” to the event. I mean, you’d think everyone already knows that I’m in recovery, right. Well, not true. I’m someone who’d be called a (recovering) “functional alcoholic.” I woke up every morning, went to work, came home, and drank in an unhealthy way, but no one was here to see that. I’m working so hard at this, and I’d love to keep my recovery private. Please help.

Dear Lady in Recovery

Hi Lady,

Congratulations on your recovery! Every single day is a victory, and I’m so happy to hear you’re thinking ahead to plan for how you’ll handle future stressful situations. However, you’re going to need to figure out how you’ll handle this situation in both the short- and long-term.

In the short term, there are many ways to deflect a drink. One of the easiest is to tell the person asking that you can’t drink because you’re driving. Everyone wants a sober driver, right? Another good excuse is to blame the abstinence on a future event, such as going to church after the event, babysitting your niece that evening, or having a busy work day in the morning. Or, combine them all! “Sorry, I can’t drink today. I’m babysitting my niece after church and tomorrow I have a super busy day at work!”

Those are the most honest ways to deflect a drink, but keep in mind that you can fudge the truth a little if someone is really persisting. For example, tell them you just finished a drink. You don’t need to specify that the drink you just finished was just soda.

Remember how I mentioned that you’ll need a long-term strategy? Well, that’s because small excuses won’t work your entire life. Eventually, people are going to catch on that you’ve stopped drinking, and might ask why directly. Or, you might just get sick and tired of repeating these same deflections, and you’ll want them to stop asking for good.

Taking responsibility for your abstinence is a huge step forward in your recovery.

Plus, and maybe the most important part, taking responsibility for your abstinence is a huge step forward in your recovery.

Respond to drink requests by saying, “No, thank you. I don’t drink.”

The sentence is simple, direct, and doesn’t leave room for additional conversation. You most likely won’t get any more questions from acquaintances, but your closest friends and family members may persist. If they ask why, remember that you have every right to protect your personal information while still answering truthfully. You can say, “Yeah, I stopped drinking. I didn’t like how it made me feel.” Period. End of story. If anyone asks, “Are you an alcoholic?” you decide how you want to respond. Some people will feel comfortable saying yes. If that’s not you, know this is fine too. Just reiterate that you were tired of not feeling healthy while drinking, and your decision is final.

But it’s not just how you handle these conversations that are important, it’s how you process the events yourself. Being newly in recovery, these parties will be difficult for you to process. Champagne toasts, open bars, and celebratory shots are all triggers. Now is a great time to build a support system and lean on them if necessary. If you’re in AA attend additional meetings.

If not, schedule more therapy sessions. If it’s too soon to attend, don’t hesitate to RSVP that you won’t be attending. Finally, if you choose to attend, stay clear of the bar, keep yourself busy, and lean on friends who know about your sobriety.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: Help Me Deal With My Panic Attacks!

Plus: Ada reminds us all that grief takes many forms, and it's okay for anger to be one of them.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

Why Isn’t My Friend Sadder Over His Wife’s Suicide?

Dear Ada,

A friend of mine recently killed herself. She was in her thirties, free-spirited and full of life. Just a week or so before she took her life, she and her husband (who I was friends with first) were talking to my wife and I about their plans to soon start trying for a family. And then just as suddenly she wasn’t here any longer.

I miss her, and I don’t know how to support my friend, her husband. He doesn’t seem to be processing her death at all. If anything, he’s very angry with her and has nothing nice to say about her whenever we talk. He says he hasn’t cried about it since the week it first happened. I don’t get it. They seemed like they had a healthy relationship, and I feel like I’m grieving her more than he is. I want to be a good friend to him, but I really don’t know how. How can I get past my loss, and how can I help him through his?

A Grieving Friend

Dear Grieving Friend,

A few years ago I was in a similar situation. The husband of one of my closest friends killed himself. We all attended college together, and I had to grieve the loss of him while also learning how to be there for her.

What I learned from this situation is that grief takes all forms and does not follow any predictable patterns. There is no correct way to feel, no path through healing, and no easy way to forgive the individual for leaving you too soon.

It is also impossible for you to understand your friend’s grief. The loss of a spouse, especially from suicide, is not something someone who hasn’t experienced this can fathom. The first thing you can do to help you both is to acknowledge this as a fact.

The way I see it, your friend is consumed with anger at his wife for stripping him of the future they planned together. He’s angry about her lies of omission— that she hid her pain and sorrow so deeply that even he didn’t recognize the signs. He’s angry that she made a permanent, life-altering decision that would rock every facet of his entire world. He’s angry that he has to wake up every moment for the rest of his life without her beside him.

Grief is not always what we expect. Anger is a normal part of the process.

The anger startles you, because it feels inappropriate. If anything, you expect sorrow. But, as I mentioned earlier, grief is not always what we expect. Anger is a normal part of the process. David Kesson, co-author of two books with Elisabeth Kübler-Ross, who defined what we know of as the five stages of grief, says, “Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss.”

And while we’re discussing the stages of grief, know that your friend may cycle through denial, anger, bargaining, depression, and acceptance in a nonscripted manner. Kesson explains, “People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.”

The best way you can support your friend is to be a constant in his life. If he wants to talk, listen to him. He doesn’t need your advice or reasoning with. He just needs someone to hear him. If he wants company, but doesn’t want the conversation to revolve around his wife, then just show up. Watch a movie together. Just be. He may want to do things to get out of his house and out of his head. Try new experiences with him. Build more memories. Be there as he takes on each new day.

Whatever you do, don’t avoid him because you don’t know what to do or what to say. No one ever knows what to say. Just showing up consistently — in person, on the phone, through texts or emails — however you can make yourself available, will help.

We like to think that we have the power to help people heal, but your friend is on a very long path that only he can navigate.

And finally, it’s important to take care of yourself, too. You too just lost a person you cared about, and while the pain may not be as severe, you have every right to feel your feelings. Grieve your loss. Talk with your wife and friends when you’re feeling low. Act as each other’s support systems. Swap stories of the good times. Remember the happy moments you all shared each other. Don’t let your memory of her fade, and do what you need to stay healthy while grieving.

If you or someone you know needs support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255.

How Do I Keep Calm When I Have A Panic Attack?

Dear Ada,

Life is stressful! I’m currently juggling ongoing physical symptoms from multiple autoimmune diseases including rheumatoid arthritis, celiac disease and eczema. On top of physical health issues, I’m deep in the grieving process over the loss of a family member and a beloved pet. I’m discovering (with the help of a therapist) that the unpredictable nature of my physical health conditions and coping with loss, triggers tension in my body, resulting in feelings of overwhelm, panic attacks and anxiety. How do you suggest calming down quickly, in the moment, when these feelings unexpectedly pop up in public, at work or while visiting others?

Thank you,

Feeling Frazzled

There’s nothing worse than panicking in public. Not only is your body and brain reacting to whatever stimuli that is causing you severe anxiety, but you’re doing it in front of other people, which just adds embarrassment to the heightened emotional and physical response you’re already feeling.

The first step to calming down during a panic attack is to recognize that you’re having one. During one, a person may feel as if they’re having a heart attack, or worse — dying. Recognizing that this is temporary experience takes the power away from those fears. Here are a few tips to bring you back to reality when you are spinning out of control.

If there’s too much happening around you, it may help to close your eyes for a few moments or minutes as you center yourself. If that doesn’t work, identify an object you can focus on instead. Does it have a unique size, texture, color, pattern, or smell? Touch the object if possible to ground yourself in the moment and describe it to yourself. If focusing on an object is helpful in these moments, it may help to carry a few on you — keychains, for example — that you can use during any future panic or anxiety attacks.

Know your triggers, and don’t make light of the experience. Panic and anxiety attacks can feel terrifying when you are experiencing one.

Next, try repeating a mantra and deep breathing. It can be difficult to think clearly when you’re in the midst of a panic attack, and repetition and speaking calmly will help you work through it. Keep your mantra short. Tell yourself something like: “I am safe and this will pass.”  Then, take one long breath in. Hold it in for a few seconds, and slowly release it. Deep, controlled breathing is what teaches the brain that the body is actually not in danger. Then, repeat the process of mantra, breathing, mantra, breathing, until you move through the anxiety and begin to feel calmer.

Finally, know your triggers, and don’t make light of the experience. Panic and anxiety attacks can feel terrifying when you are experiencing one. If you can identify your triggers, you can put the work in to avoid them when possible. With your current situation, that might mean additional therapy appointments, making more space in your schedule for rest and recuperation, or even massages to reduce the tension in your body.

And remember, as life-altering as these events may feel in the moment, know that they are only temporary, and you will get through them.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

How To Find The Right Specialist

Whether you are trying to find a diagnosis or get better treatment, here's how to find the right doctor, from a woman who knows.

In 2011, I was diagnosed with stage four gallbladder cancer, a rare condition that’s almost always fatal within months. The reason I’m still alive is that as an experienced researcher, I was able to find experts who provided innovative care. So, from one patient to others, here are some suggestions on how to do it.

Find A List, Then Consider How It Was Compiled

If you type keywords, such as your diagnosis or symptoms, into a search engine like Google or Bing into find a specialist, the websites that turn up are likely to provide similar information about each doctor’s education, years in practice, and board certification. They might, however, differ in how they select doctors for inclusion.

The most comprehensive list is maintained by the American Medical Association, which says that its Doctor Finder database includes “virtually every licensed physician in the United States.” With more than 814,000 listings, it’s searchable by geography and specialty… but you might find yourself drowning in options.

Insurance company websites, by contrast, are likely to list only in-network doctors, as medical center websites list only doctors who practice at that facility. Similarly, Medicare’s Physician Compare, which offers unusually detailed information about each doctor, includes only those who accept Medicare. If you need a specialist within a particular network or geographical area, you could start with these websites to identify the most promising possibilities, and then use other tips in this list to decide which of them is best for you.

Still other websites list only doctors who pay to be included. An example is  ZocDoc, which matches patients with doctors who have immediate openings.

Photo by Sarah Pflug from Burst

Be Picky!

Look, you want the best specialist you can find. The trick is how you find that person.

To find doctors selected for their accomplishments, a long-standing option is Castle Connolly’s Top Doctors list of physicians nominated by other physicians and then vetted by a review team. Although individual physicians cannot pay to be included, medical institutions can pay to allow free public access to detailed information about Top Doctors at those institutions. By contrast, only the names of other Top Doctors are available unless you pay for access to additional information. Alternatively, you can use other tips suggested here to learn more about a Top Doctor once you have the name.

You want the best specialist you can find. The trick is how to find that person.

Among newer, free-of-charge websites that use evaluative criteria is Amino, whose research includes such factors as insurance claims, medical billing records, how likely doctors are to perform certain procedures, and how many patients they see with a particular condition. Since doctor-finder websites are many and varied, it’s worth searching for something like “physician-patient matching” for a list of available websites.

Always Check The Source

There’s a lot of noise out there when it comes to finding a medical specialist. There’s also a lot of sites that are just trying to scam you. Make sure when you’re searching for a specialist, you know that the source recommending them to you is who they claim to be.

There’s a lot of sites that are just trying to scam you.

In addition to clicking the “About” tab on each website to learn how it selects doctors, you might also look at the URL. For instance, even if a website’s title includes words like “national,” “federal,” or “government,” it’s not a government source unless the URL ends in .gov.

And before relying on any website not associated with a well-respected medical center or a legitimate organization like the American Cancer Society, it’s a good idea to look for reviews of the website itself. If there are no reviews, it is, at best, not a well-substantiated source.

Photo by Matthew Henry from Burst

Don’t take Patient Ratings at Face Value

Patient ratings of physicians are widely available on websites such as Healthgrades, Vitals.com,  U.S. News Doctor Finder, Angie’s List, and RateMDs.com. Still, tempting as it may be to use consumer satisfaction to choose physicians as we do toasters or cellphones, those grades can be misleading.

Consider, for instance, a search I just did on Angie’s List for internal medicine physicians in my area. Several doctors have a grade of A, indicating their average score. Then comes someone with a B, and many patients might stop there and choose one of the A’s. But of that doctor’s eighteen reviews, seventeen are A’s, with glowing descriptions of her thoroughness and caring attitude. A single F dropped her average to a B; the reason given is that the staff didn’t answer email quickly enough.

Try to look at the big picture, not just the rating.

Of course, if patients consistently made the same serious complaint, that would be cause for concern. But as a Consumer Reports summary of a study in the Journal of the American Medical Association points out, most doctors don’t get enough reviews to provide a reliable guide. Moreover, as WebMD observes, the objectivity of ratings websites may be open to question if they accept advertising from doctors or offer paid profiles.

The lesson? Try to look at the big picture, not just the rating.

Hospital Quality Matters

Some institutions are more competitive than others, and their teams have more experience with rare conditions and procedures. Websites like Consumer Reports, Medicare’s Hospital Compare, and U.S. News Best Hospital listings can help you identify top institutions, as well as providing data on such measures as safety ratings, surgical complications, and hospital-acquired infections. These ratings aren’t as useful as they might be, since not all hospitals report all, or any, of the requested information. Still, they’re a place to start.

There’s Always Pay-To-Play

If you prefer, you can have a professional service select a specialist for you. I’ll use Grand Rounds as an example, since it’s included in the health care plans of several large employers, such as Comcast, Wal-Mart, and Costco, and is also available to the public.

Grand Rounds will connect you with a specific doctor based on such things as where they trained and where they practice, how often they’ve performed certain tests and procedures, and patient outcomes. Unless covered by your employer, the service costs $599. Grand Rounds will also commission an online second opinion by a prominent expert for $700 to $7500.

Wrapping Up: How Do You Know When to Stop?

You’ve probably heard about patients who suffered for years before finding the right diagnosis or treatment. For them, persistence paid off. But you’ve probably also heard accounts of patients, or their loved ones, prolonging terrible pain and expense by refusing to accept the limits of medical knowledge, or the futility of prolonging life in a body that’s no longer viable.

When I faced that question in 2011, I consulted eight doctors before finding the surgeon who saved my life. For me, the search was justified because I was healthy enough to live for years if the cancer could be eliminated, and because my diagnosis was so rare that much of what doctors said was based on assumptions rather than data. Under those conditions, I kept searching for a top-tier expert who’d consider my specific case with an open mind.

Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same…

Photo by Sarah Pflug from Burst

I’d like to think that if I’m ever in a situation where medical intervention is useless, I’ll have the sense to choose comfort care — but no one can be sure of that. With life itself on the line, those decisions come as much from the gut as from the brain, and no formula can provide a flawless answer.

So, along with the practical suggestions offered here, I add some advice from Dr. Atul Gawande in Being Mortal.

“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?”

Advice

Ask Ada: Should I Tell My Daughter I Have Skin Cancer?

Plus: how do you help a family member through their grief when they prematurely lose someone?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

My Mom Is Isolating Herself After My Father’s Death

Hi Ada,

My father died around six months ago. Although his death was not unexpected, it took a huge toll on all of us, but especially my mother.

My mother has always kept to herself, but lately, she’s been completely isolated. She sees my brother, sister-in-law, and their son (her grandson) fairly often, and she talks to me on the phone, but I’m worried about her. She doesn’t have anyone else to talk to, she doesn’t have many hobbies, and she doesn’t have a strong community. When we talk, her affect seems flatter. Yet, she tells me she’s happy living alone and enjoys keeping to herself.

I’m worried she’s developed major social anxiety and won’t leave her house because of that. How do I help her?

-Arielle

Hi Arielle,

There’s two ways of looking at this. First, your mother says she is happy keeping her own company. If she has always been introverted and avoided social affairs, then she’s likely coping as to be expected. As you well know, grief has no set trajectory, so one moment she may be fine and enjoying the quiet of her home and the next she’ll exhibit normal signs of grief, such low energy and a flatter affect.

However, if the isolation began to manifest after your father passed away, you may have something to worry about. You’ve already picked up on a few changes, so continue to be on the lookout for signs that she’s really distancing herself from the outside world.

Grief has no set trajectory.

Has she stopped shopping and instead gets food or groceries delivered? Does she cancel doctor appointments or other commitments? Has she stopped going to church or an activity she once enjoyed? Does she seem afraid to drive or visit enclosed places, like a mall, or wide open spaces, like a park? These changes in her life and behavior tend to point to something more serious, such as anxiety, depression, or even potentially agoraphobia.

Now is an important time to increase communication with your mother. And you don’t have to do it all alone. Call in backup. Enlist your brother and his family to help. Teach her how to video chat, so she can see your face during your regular chats. Suggest your brother initiate a weekly family dinner, so your mom has access to others at least once a week.

I know you said she doesn’t have a strong community, but any positive social interaction will help at this point. If she’s religious, she may enjoy a house call from a priest or church leader.  Contact friends of hers and your fathers and encourage them to check in on her. You don’t have to make a big deal about it to them if you’re concerned your mother would be upset by your meddling — just mention that you want her to socialize a little more now that she’s alone, and you’d love for them to keep in touch with her.

If she is truly avoiding the outside world and becoming recluse, the best thing you can do to help her is to encourage her to talk to a therapist and calmly attempt to get her out of her home. The more isolation she has, the more her social phobia is encouraged. Get her outside, even if it’s in her backyard or for a short walk in her neighborhood. Attend appointments with her as a support who will ease her anxieties of being alone.

It may even be a good idea to dedicate a space to your father, such as a park bench or a brick in a new building. This will give her a special place to honor his memory and extra initiative to spend time out of her home.

Photo by Matthew Henry from Burst

Should I Tell My Daughter About My Cancer Diagnosis?

Hi Ada,

I’m lucky to exist in a teeny tiny family. It’s just me, my husband, our eleven year old daughter and both of our parents. There are no aunts, uncles or cousins, so we’re all extremely close. Well, that’s how it was last year. Almost a year ago we lost my mother and my father-in-law to late stage cancers. It was extremely sudden and they both deteriorated quickly and almost at the same time. My daughter was devastated. She went from being a vibrant little girl to a quiet, anxious one.

Here’s the problem. I just found out that my biopsies were abnormal. I have skin cancer now. It isn’t advanced, and my doctor seems very hopeful, but everything I read online scares me. I’m terrified how my daughter will react. Should I keep this from her and only tell her if treatment progresses and things get more serious? If not, how do I tell her? I’m afraid this will crush her.

Sincerely, Small Family Mom

Dear Mom —

I’m so sorry for everything you’ve experienced — and will experience — in this immensely turbulent year of your life.

I’m not sure this question has a straightforward answer. You know your daughter best, and I have limited information about her here to go on. But based simply on how she handled the death of her grandparents, my advice would be to temporarily hold off from telling her about your cancer, until you ascertain how serious treatment is going to be. My instinct is that if you only need a little outpatient surgery to treat your skin cancer, and if your oncologist doesn’t believe this incident to be much more than a blip, you’re better off sparing your daughter an unnecessary emotional trauma.

If you decide to tell her about your diagnosis, the key thing to focus on is making sure you present the information in a manner which she’s able to understand. Be calm, explain what’s happening, and tell her that you have a plan for how you’ll treat it. Reassure her that your diagnosis won’t have the same outcome as her grandparents. Then, continue to check in with her to monitor how she’s processing the news. By presenting the information in a calm, confident, and unconcerned manner, you’re projecting that everyone is safe and everything will be okay, even if you may not feel that way on the inside.

Most importantly, explain to her that nothing she did caused this.

And most importantly, explain to her that nothing she did caused this. Children often blame themselves or feel guilty after learning their parent—one of the most important people in their world—has something wrong with them, like cancer. Her world has already been turned upside down with the loss of her grandparents, and news like this may make her lose her footing.

If you haven’t already done so, find a counselor that can help your child work through her losses and process your diagnosis—if you do choose to tell her. It doesn’t matter if she is three or thirteen, the loss of integral loved ones at such an early age is something very difficult to cope with, and she likely doesn’t have the skills to do it on her own.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

How To Job Hunt When You’re Disabled

Finding a job when you're chronically ill can be a challenge. So we spoke to an expert who has placed hundreds of disabled jobseekers for tips.

When my chronic illness started in the the winter of 2012, I tried to shrug off my symptoms. Desperate to keep my job at a small public relations firm, I ignored my growing fatigue and unexplained nausea and forced myself out of bed every morning… until I collapsed. I was hospitalized, and I eventually learned my illness was never going to go away – but it would take several more weeks before I would accept I couldn’t work like I had before. My illness required creative thinking.

I’ve had difficulty working full-time since. Nor am I alone: in the United States, only 22% of people with disabilities are employed, while only 4% of them were not in the market for work. Given that a billion people are disabled worldwide, that’s a huge pool of talent being ignored by employers, who can be reticent to hire people with unpredictable chronic illnesses, or limited capacities in other ways.

So what can a chronically ill or disabled jobseeker do to increase their chances of being employed?

Workbridge, a national recruitment agency based in New Zealand, works with both employers and jobseekers to help people with physical or mental health conditions find the right fit. They fill more than 3,500 positions a year, and are “inundated with employers” looking to advertise and work with them, according to Employment Consultant Nicola Zielinski.

Zielinski, who’s been working in this sector for fifteen years both in New Zealand and the United Kingdom, says that Workbridge places 90% of the people they work with. But when you’re chronically ill or disabled,

“It’s very rare that there’s not a job out there for someone,” says Zielinski, who says Workbridge places 90% of the people who come to them.  “I get asked what sort of sectors we work in, and I say: anything. People with disabilities can do all types of jobs.” You just need to maximize your chances.

Be Patient, And Think Outside The Box

Finding the right job can take time. Zielinski encourages jobseekers to find a way to connect with others first, like volunteering.

“It’s easy to look at it and see the end goal of paid employment, far away,” But you can break it down into steps. Volunteering or very part-time work can test your skills, give you new ones, and give a sense of routine and purpose that many people need.”

Paul Hoverd, a 50-year-old stroke sufferer, is a perfect example. Paul had extensive experience in many fields, including as police officer and a teacher. Feeling unable to do that sort of role following his stroke, he went through six months of job rejections. What finally got his foot in the door was when Workbridge discovered Paul’s love of animals and photography, and suggested a first step: volunteering with the local SPCA (Society for the Prevention of Cruelty to Animals).

“Opportunity could look different to what you thought.”

The unpaid gig gave Paul the opportunity to rebuild confidence, get back into his routine post-stroke, and practice his pup photography. Soon, he was working at a canine kennel, and is now trying to take his work to a new level by attaining his Bachelor of Visual Arts and Design.

Making a plan is great, but be prepared to deviate from it, Zielinski says. “Opportunity could look different to what you thought.”

Be Upfront With Your Prospective Employers

Disclosing the nature of your disability early on means both you and your employer know your abilities and skill levels. Many companies are eager to hire qualified people with chronic illnesses and disabilities, but they are afraid of uncertainty. Being crystal clear at the outset about what your capabilities are can go a long way to removing that uncertainty from the hiring equation.

“Often people have been living with their condition for a long time, so they know exactly what their abilities are,” says Zielinski. But a lot of times, what they can or can’t do because of their illness is the elephant in the room, which no one wants to directly address. It’s understandable that a job-seeker who is feeling sensitive about their limitations might want to avoid the subject, but it’s best to just tackle the issue head on.

“It’s important to establish those so everyone feels informed. Recently I worked with someone who has Cerebral Palsy, whose speech is affected. Other than that his disability is invisible, so someone hearing that can make assumptions. He’s learned to let people know what’s going on.”

Remember: You’re Worth Hiring. 

While it’s important to let people know if you have any limitations, Zielinski says it’s still critical to keep the focus of the interview on what you can do, not what you can’t. And a big part of that is being positive.

“People will be keen to work with you if you’re positive and committed, and clear about your limitations so they know all the information from the start,” she says. “Attitude is the number one key ingredient to getting a job. Most people can learn how to do a job, but what goes a long way is someone’s willingness, honesty and openness.”

“[Getting a job is] much more about ability than disability.”

Many disabled people can understandably feel defeated by the jobseeking process even before it starts. But it’s important to go in believing in yourself, and remember that you are worth hiring. Because if you’re not going to advocate for yourself as the best person for the job, who will?

At the end of the day, most employers want the most qualified and confident person for a job. Illness or disability doesn’t necessarily factor into that. “It’s much more about ability than disability,” Zielinski says.

Employment Is A Two-Way Street

Zielinski’s advice gels with my own experience. Though I never went back to my old job full-time, I have, in the years since, been able to reclaim a lot of my sense of purpose through volunteering my PR skills to a local women’s organization, as well as freelance writing, which lets me work around my illness and set a lot of my own deadlines.

And as for community: it’s just as key as Zielinski suggested. Isolation is an issue for many people with chronic illness and disabilities. Luckily for us, we live in a world where we can get connected even if we can’t leave the house. And we can get work that way too.

The statistics don’t lie. Disability is an ever-growing challenge, and people living with it are vastly underrepresented in the workforce. But all of us have something to offer. And our best efforts should be met by employers who recognize just how much talent is going untapped.

Advice

Ask Ada: Social Media Is Triggering My Grief At Being Chronically Ill

Ada helps a son come to terms with his relationship with his mother after her stroke. Plus, how to deal with jealousy and grief after PCOS.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Find Closure With My Mother After Her Stroke?

Dear Ada —

I’m an only child, with a mother in a nursing home after a severe stroke, which diminished her greatly. Before her stroke, my mother was a very difficult woman whom I loved very much, but spent a lot of my time in conflict with, especially after my father died. She would constantly accuse me of not doing enough or spending enough time with her, and blame me for everything bad that happened to her, even though I was doing everything I could to help her.

I tried a lot of things over the years to try to have a better relationship with Mom, because I knew I was all she had. Nothing worked though, and I finally just decided that nothing would improve our relationship: my mother was a malignant narcissist, and there was nothing about that I could change.

But then the stroke happened. Since then, my mother is a totally different person. Although her cognition is severely impaired and she rarely speaks, she is much sweeter now than she once was. She also seems much more grateful for the things I do for her, and more likely to tell me I’m a good son, and that she loves me.

You’d think I’d be grateful for this, but instead, I’m conflicted. I keep on asking myself: Could I have misjudged my mother all these years? Is it only now that I’m seeing the sweet person she is at heart? But then I think to myself, no, it’s a personality change due to the brain damage.  But that just makes me feel even worse, because the truth is, I prefer Mom this way.

Can you offer any advice on how to come to terms with the toxic history my mother and I share, post-stroke? Thanks.

 Guilty Son

Let me start by saying something which may be obvious to you: your mother isn’t the same person anymore.  She can’t address any of the previous toxicity in your relationship.  The stroke your mother had permanently altered her personality, and if you are going to rebuild your relationship with her, it has to be with the person she is now, not the person she was.

Looking forward means accepting that, for all intents and purposes, the stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

The stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

Of course, this all seems easier said than done though, doesn’t it? If you’re looking for instructions on how to move forward start here: write a letter to the former version of your mother. Tell her exactly how you feel. Let her know how she let you down, held you back, or made your life unbearable. Get everything out there and on the page. Then, once you’re confident you’ve let loose, destroy your letter. Burn it. Rip it up. Shred it. You have this opportunity to let your voice be heard.

As for whether you misjudged your mother, it’s important to remember that people are multifaceted. Just because someone is full of bile doesn’t mean there isn’t sweetness there; just because someone resents their child doesn’t mean they aren’t also grateful for them. Traumatic brain injuries like a stroke have a way of reorganizing those facets, and sometimes stripping them away. Instead of doubting yourself because the gentler facets of your mother’s personality are now more obvious, try to practice gratitude instead.

 

Photo by Lisa Johnson from Burst

After PCOS, Facebook Posts About My Friends’ Kids Are Making Me Sad

Dear Ada,

I have polycystic ovary syndrome (PCOS), and the scope of my condition means my partner and I can’t conceive. This alone has been a lot to come to terms with, but it’s made worse by the fact that all of my friends have had children in the past two years. Our lives are on different tracks now; I feel isolated from the emotional understanding they all seem to share.

I have good friends. They were hugely supportive of me when I learned pregnancy wasn’t an option for us. But lately, I’ve been feeling bitterness and resentment toward their lives, and this club they’re all a part of. I’ve been withdrawn, and have shut off all social media because their posts cause me pain.

Should I step away? My friends would likely respond graciously if I told them my feelings, but I don’t know if I can let go of the way I feel.

— Lonely Laura

Oh, my heart hurts for you. Not only has PCOS stripped you from the opportunity to have children, but it is also threatening to rob you of your friendships.

Because you’re still mourning, it’s important to protect yourself from things that trigger you. If you know that social media is one of them — like it is for so many people — continue to avoid it.

And get out there and make new friends who understand what you’re experiencing. There are so many support groups, locally and online, with women and couples who are also unable to conceive. Open up. Be vulnerable. Build a tribe who gets you.

Open up. Be vulnerable. Build a tribe who gets you.

But should you also avoid your friends at the same time?

No. Absolutely not.

The best friendships are flexible, allowing each of you to cling more or retreat slightly from the relationship as life happens around you. At this moment, you may not be able to fully immerse yourself in your relationships, but that doesn’t mean you should abandon them.

For friendships to really work, they require open communication and honesty. You know your friends want to support you, but you’re not giving them an opportunity to do so, and you need support right now, not distance.

Avoidance isn’t going to help you move through this. What will help is the love and support of your friends, both old and new.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.