Living with an invisible illness…

This is a longer post than I usually write, but through the years these have been some things I’ve wanted to say. So…thanks for taking the time to read!

Everyone has issues they have to deal with. Everyone.

Sometimes they’re obvious—and often when they are, people are willing to give someone a break…to understand when they have to change plans or when something goes wrong.

But some of us live with invisible illnesses or invisible disabilities, and those are harder…for everyone.

Everyone’s life is different, but I’d like to just share some musings from my life with one of those invisible disabilities—multiple sclerosis (MS). I was diagnosed with it in 1976, so that’s a lot of years with it…and while I’ve been very fortunate (and blessed) in my life, there are some things that I would like to share.

I’ve been able to do most of what I want—at least in some fashion—for most of those years. But if I’ve gotten too tired, too stressed, or too hot, all my plans may end up going out the window. Not because I want them to, but because I simply can’t do what I’d originally planned. I know that those changes may impact others, and I’m sorry about that. But unfortunately it’s not something I can do anything about—not if I value my own health.

And that brings up another point…fatigue. I understand that everyone gets tired. But what I call “MS fatigue” is different. It’s difficult to describe, because it’s not something that can be taken care of by a nap or by a few nights of really good sleep. It may feel more like trying to walk through thick jello with 50-pound weights on my legs. Or it may feel like my eyelids have weights on them and I just cannot keep them open. That fatigue may last for several days (or longer) or it may disappear in a day or two…suddenly. I never know.

Part of my daily schedule since 1976 includes a nap. Not necessarily to take care of the fatigue, but to give my body a chance to rejuvenate on a regular basis. I can skip a nap one day—but if I do, I pay for it the next several days. I may sleep as little as 30 minutes…or my nap may go a couple of hours. It all depends on how hard I’ve been pushing myself. And because the nap is so important to my health, it makes retreats and day-long meetings challenging. My choices during them are usually either eat lunch or take a nap. The nap wins…always. Unfortunately that means that I miss the fellowship and visiting that often goes on—and that’s something I really miss. I’m always delighted when the schedule is designed so that there is some quiet time after lunch for everyone. Then I don’t feel left out or feel like the odd one.

I try to be vigilant about being around people who might be sick, because I can’t afford to have a fever. Even one degree triggers some of my problems with MS…so when I do get sick, it’s often a balancing act between letting a fever help burn away whatever germs are causing the illness and trying to keep my body from getting too hot and kicking in an MS exacerbation.

Speaking of sickness…there are a few comments I’ve heard far too often and that are not at all helpful. Please don’t insist that the regimen your aunt or a friend or someone else followed is the one I should also follow. Through the years I have had doctors that I trust and work with—and believe me, through the years I have asked about various “treatments” that someone has shared. My doctors have been willing to investigate alternative therapies along with conventional medicines—and I trust them.

If you are religious, please don’t tell me “I know if you have enough faith, you’ll be healed.” Of all the comments that can be made, I think that’s one of the cruelest. For someone who is already struggling, this comment places the “fault” for not being healed on their supposed lack of faith…and that is just another burden no one needs to carry. Just as an aside, while I still deal with MS symptoms and issues, I do believe that I’ve been healed—I just haven’t been cured. From my perspective, there are several different aspects of healing—physical, mental, emotional, spiritual—and while I would love a physical healing, in my case I have found the other aspects to be more important.

I am appreciative when you let me know that you will be remembering me in thoughts and prayers. But don’t insist on making a public “spectacle” of praying over me. That’s embarrassing…and, for me, has little to do with your concern for me.

Remember the rest of the family. While I’m the one dealing specifically with the illness, it affects the rest of the family as well.

And one last thing…I am more than my illness. I am still me—someone who loves my husband and kids and grandkids, music, books, dogs, life. So please…let me be me.

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