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 firstname.lastname@example.org or tag @folksstories on Twitter with the #askada hashtag.
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
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?
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
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 email@example.com and tell us your problem.