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I don't want to talk about it: Communicating about chronic disease

Cypress trees along Lady Bird Lake during a recent morning run


As we gather with friends and family over the holidays, many of us are destined to end up in awkward conversations about our health. Especially if our diagnosis is new, or we have suffered a recent relapse, or transitioned to using a cane or wheelchair, there WILL be questions. We may be able to skirt around the subject, preferring a less-loaded topic, like, say, the impeachment inquiry. Or we may get stuck fielding questions about what it's like to have a serious chronic illness, what medicines we are or aren't taking, and how all of this is impacting our life.  


For those of us with MS or another chronic disease, discussing our less-than-perfect health, our feelings about our diagnosis, and our plans for adapting to our changed condition can be painful. We often think about our limitations far more than we'd like, and we don't want extra reminders of our illness from others.


I've been at joyful events – holiday celebrations, special dinners, weddings – enjoying carefree time with friends and family, NOT thinking about MS, when someone will ask, with all the best intentions, "So how is your health?" It can be jarring and unwelcome, even though I may feel grateful for their concern. (In fact, if they didn't ask, I may wonder later, "Wow! They didn't even ask about my health!)


But for a partner, friend, or family member, our silence can be frustrating, leaving that would-be confidante and support person feeling unappreciated and disconnected. "I just want to help. How can I help when she won't talk about it?" the partner/friend/family member may wonder.


Both perspectives have validity. Those of us with a chronic disease may not realize that others who care about us suffer too because of our illness, especially when we are unwilling to talk about it. And yet sometimes those who care overstep and put pressure on us to overcommunicate.


So how can we bridge this divide? I've shared some ideas below.


If you are the person with MS/other health condition:


- Get in touch with your own feelings about your diagnosis. Through journaling, meditation, long walks, counseling, or some other means, sorting out your mishmash of emotions can provide clarity and guide how you want to communicate with others.


- While it may feel intrusive or overwhelming, recognize that usually people who are interested in your condition are concerned about your welfare. They want to help. Try to meet their inquiries with gratitude rather than irritability. And don't be afraid to accept help! You don't have to bear this burden alone.


- Communicate your preferences, at least a little. If you do not want to talk about your condition, now and maybe not ever, that is OK. But it may be hard for people who care about you to know how to handle the situation. At least try telling them "I know I have this condition, but I don't want to dwell on it. I'll let you know if something big happens with my health, but otherwise, I'd like to move on. I am grateful for your support, and I'd rather spend my time with you talking about other things."


- If you have a lot of different people asking for updates and wanting to help, realize, in fact, you're lucky! But if it feels like too much, designate one person who can be your spokesperson and provide appropriate updates on your behalf.


If you are the would-be support person, struggling to get your loved one to share her burden:


- Don't ask questions at the holiday dinner table. If you are concerned and feel the need to check in on your loved one, find a quiet, private place to do so.


- Strive to accept that person where she is in the process of coming to terms and living with her diagnosis. "I am here for you, and I'd like your guidance about what being here for you should look like." You might then make suggestions, especially if you sense that extra help is needed: "Would it be OK if I texted or called you to check in once a week?" "Can I pick up groceries for you when I'm going to the store?"  


- Follow her lead – and tell her you are going to do so: "I know it must be hard to live with this diagnosis and the uncertainty it creates. I would be glad to talk about it if you ever want to. But I respect your preference to not talk about it. Please just let me know if something changes."


-  Find another outlet for your impulse to "do something." Join a walk, bike ride (like the MS150), or other activity, as a participant or volunteer, to support people with the condition. It's a great way to honor your loved one. The National MS Society, for example, has a wonderful calendar of events filtered by activity and location.


MS or another chronic illness is often stressful and can create friction in our close relationships. But it can also strengthen those bonds, especially if the people involved can check in with each other and agree to terms for communicating, accepting the boundaries requested by the person with the condition.


I'd be delighted for others to share suggestions. Please add your own tips in the Comments below.


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