What I Wish My Family Understood About My Chronic Illness

It’s been a journey for me over the last five years — one of acceptance that, for me, has taken all of that time. Some days I regress to thinking I should be fine, and I get upset when I can’t do things.

My closest family often thinks I should be fine doing most things too. They don’t understand that when I say no, I already evaluated my current health before I made any decision. Cajoling doesn’t make me feel better. I can’t turn my symptoms on and off.

Some days I know I am making a poor choice; I am going to attend the event, and my body will pay for at least the next two days. The migraine that is already starting to flare will send me to the couch tomorrow. If I take my acute medicine today, I will sound like I’ve had two drinks. My fibromyalgia pain will ratchet up another notch or two, but I will do some extra stretches every time I use the restroom to try to stay limber. I power through, as they say.

Other days, it is a hard no. I can’t do it. When I tell them, it’s met with silence, but it speaks so loudly. “What do you mean, surely you can just come over?” “It’s just dinner, and you need to eat anyway.” “We’d really like to see you.”

When I first became ill to the point I couldn’t work, when we were trying to find the right combination of medicines that would be of help to me, I spent a summer on the couch, literally. I don’t remember much from that time. I was the space cadet version of myself.

I’d known my thoughts had slowed down and I wasn’t as sharp as I used to be. I would have trouble joining conversations because by the time I had my thoughts together, the subject had naturally moved on. I’d gone from being the smartest one in the room to sitting there not saying much, or repeating myself.

My nieces and nephews were worried about me. It broke my heart.

Often, I didn’t take or delayed my meds until after visiting, so I wouldn’t be as bad when I was around them, but the pain sometimes made me act similarly. Then someone would take my cane away saying I didn’t need it. I couldn’t win. It wasn’t that I couldn’t walk without it — it just helped me keep my balance that could be a little wonky from bursitis in my hip, and it kept me from getting tired so fast.

Yeah, I didn’t tell them about that, I just let them do it. If I told you about all of my health conditions, it would take an hour. The patient summary I get from my primary care provider is almost two pages long. I think it’s missing a few things diagnosed by a different doctor from another clinic. I can’t even remember them all; I have holes in my memory, both long and short-term. Thank goodness for cell phones and electronic calendars. I put everything in there. I set multiple alarms for appointments, anything I can to make sure I don’t miss something. Please, God, never let me lose my phone.

I have a migraine every day. Every. Day. If I don’t have one when I wake up, I am so happy; I can’t even begin to tell you. I usually try to savor it by myself with a cup of decaf. It’s almost always back by the afternoon. If it’s bad enough, my hair hurts. I know what your thinking; your hair is technically dead cells, but I swear I can feel each individual hair follicle, especially when I lay down.

I’m doing everything I can to take care of myself. Everything new my care team suggests, I’m all for it. I’ve had huge needles stuck in my head to numb it, at least it felt like they were huge. I’ve had multiple rounds of 31 shots in my head every 12 weeks. Multiple medications tried and discarded. One gave me such vivid dreams I couldn’t separate them from the reality of my day.

I was lucky to have had disability insurance provided by my employer, so I was still receiving a reduced salary. If I didn’t, I would have depleted my savings long before now, and I was always a good saver. Medical bills add up quickly when you are trying to figure things out, especially when you have procedures that cost between $1,000 and $3,500 each. The insurance was something I would never have considered for myself. Before I fell ill, I never imagined I could get this sick.

Going from medical insurance in the corporate world to the Healthcare.gov marketplace held some sticker shock. I went from paying $200 to $500, then over $700 a month for insurance. I’d done the math; in the long run, the Gold plan would end up being cheaper for me. I would easily meet the out-of-pocket maximum in the first six months if not sooner. Unfortunately for me, it always turns out to be earlier because every year, I seem to have another health catastrophe. Thank goodness I can claim all this on my taxes and get some extra money back next year.

I now live in what is my new normal. It is drastically different from the way I used to live and work. I used to be a list maker at work, especially before I left for vacation — I could name 200 items without repeating myself. Now I have trouble keeping a list of 10 things straight. Toward the end, before I had to stop working, I got up, went to work, came home and ate dinner then fell asleep on the couch before going to bed. Weekends were spent on the couch, trying to regain my strength. Now I’m lucky if I can function for more than a couple hours and still make sense to anyone but myself. I don’t leave the house unless I have to, and I don’t do more than one or two things while I’m out. I rarely make appointments before 11:00 a.m. because mornings are the hardest for me.

I recently took the opportunity to help my sister when her dogs had puppies. I told her I would be their nanny; I don’t do anything while I’m at home, I could do that just as easily at her house while I watched the puppies and let the momma dog outside. I never realized it would be such a good experience for me. A little too much at times, but for the most part, being part of the experience of watching these tiny puppies grow healed a part of me that I didn’t know need tending. Bringing one of them home with me when I have resisted getting a pet for so long has been such a blessing. She is my constant companion and has made me worry about someone else rather than my own troubles.

My health continues to baffle me. Today I found out I have two sprained ankles. Not sure how I did that, but I shake my head about a lot of what goes on with me, because I really don’t know. What happens to my body seems to happen to both sides rather than just one. Now, I often wait for what’s going to happen next.

Looking at me, it’s easy to forget I am ill. I am in my 40s, and although I’m not in great shape, you wouldn’t necessarily guess I have chronic illnesses. I think that is a big part of why there are often misunderstandings. Some days I am feeling pretty good, and it’s easy for my family to forget I’m not the same as I used to be. Another factor could be that a family member of my sister’s husband was diagnosed with Alzheimer’s, and her mind is fading quickly. They may be making too many comparisons between us.

I love my family, and I know they love me. They all have busy lives, and unfortunately, mine isn’t. I wish it was filled with a satisfying professional life as it once was. I’m a homebody now. Sometimes I don’t leave the house for a week at a time. It doesn’t bother me. I keep up with current events, I watch TV, I read, and I nap when I need to. I love my audiobooks, and my Kindle text to speech feature is fantastic when I’m having issues with the bright display and can’t read. There is nothing better than sitting on my screened-in porch on a warm summer day, eyes closed, and listening to a good book.

I wish I could get through to them that this is who I am now. We all change in different ways over time. I hid a lot from them before I stopped working. No one knew the extent of the pain I was feeling and continue to experience. I never shared the number of doctor appointments I was going to or what all the results were. Communication hasn’t been one of my family’s most durable qualities. It’s something we all need to work on, myself included.

I shouldn’t put all the blame on my family for not understanding. If I want them to accept that I have a chronic illness, I need to convey more effectively how I’m feeling. They can’t tell by looking at me, so I need to speak up and make sure they understand how I feel. The more we open the lines of communication, the better we will understand each other.

My family isn’t a group of mind readers. I am the one who has to take the initiative and make sure my friends and family are aware of how my symptoms are affecting me at any given time. And that’s what I intend to do from now on.