Don’t Judge if You Don’t Know – Chronic Illness Can Be Invisible
I work hard to hide my chronic illness from my kids. I don’t want them to worry about it and I try hard to not let it affect their childhood. Since I have a degenerative condition, I don’t know what the future will hold or how my condition will impact our lives. So, while I’m able, I try my best to hide my autoimmune disease.
Most people who know me don’t know I have an autoimmune disease. The perk of an invisible illness is that it is invisible, mostly. I can’t hide the chronic sinus infections that I get as a result of my compromised immune system, but people just assume that I have bad sinuses. Fortunately, all of my skin infections have been in areas covered by clothing, so I can hide them. I hide pain by walking slowly or sitting out activities. I look like a lazy mom, not a sick mom.
As long as I wear makeup, I look relatively healthy. But there are definitely things about living with a chronic illness that are hard to hide and cause people to judge me as a parent. It takes a lot to keep me moving.
I give myself an injection every two weeks that suppresses my immune system so that it will stop attacking my body. I take two different pain management pills twice a day, one pill once a day and I have several back up pain medication for bad days. I go to acupuncture twice a month, visit my rheumatologist every three months and see various other specialists for some of the other conditions related to my disease. I also take several vitamins and supplements as suggested by my rheumatologist to keep my body as healthy as possible.
Being chronically ill is expensive and time consuming. I’m not sharing this for sympathy, I’m sharing it so that if you have a loved one who “looks” fine but says they are ill, you can understand what they really go through. It isn’t easy pretending to live in a healthy body.
Chronic Illness Facts
While these chronic illness facts are mine, I would bet money that most people who live with chronic illness – particularly parents – could share the same facts.
- Not all disabled people use a wheelchair. While I don’t like to classify myself as disabled, there are many times when I am definitely not able-bodied. Many people struggle with invisible illnesses that cause them great pain or other physical or emotional symptoms that are extremely difficult to manage all day, every day. Think about how bad you feel when you have the flu. Now imagine living with that 24/7 for the rest of your life.
- I’m not lazy, I am smart about the energy I expend. You may see a “perfectly healthy” person at the grocery standing by while the checker bags her bags and think she’s so lazy, she’s slowing down the line. Instead, give her the benefit of the doubt. Maybe she’s a mom living with chronic pain and doesn’t want to use up the little energy she has left after grocery shopping bagging her groceries, but playing with her kids at home.
- I’m not a bad parent because my kids get lots of screen time. I hate screen time. My preference would be for my kids to play and create and read. However, there are days when I am really not feeling well so my kids are on screens a lot of the day. I have to be in a pretty bad health space for that to happen, but it definitely happens.
- If you drop by my house when I’m not feeling well, my house will be a mess. My autoimmune disease is rooted in my hips. I have a lot of inflammation and deterioration in my hip joints. When my medication is working for me, you wouldn’t know it. When I’m in a flare, or just autoimmune sick, it is hard for me to bend down to pick up toys. My house will be a huge mess. Don’t judge. I hate being in a messy home but sometimes it is out of my control.
- On bad days, my kids eat junk. I try really hard to keep us all on a healthy diet. It’s good for me, it’s good for my growing boys. We eat mostly organic food and very little processed food…except when I’m not well. When I’m in a flare or just feeling autoimmune sick, I take shortcuts on everything, including food. Those are the weeks my kids are eating chicken nuggets and french fries from the drive through, or if I’m not feeling too terrible, frozen (organic) nuggets and fries or macaroni and cheese. Healthy eating is important to me but there are days when my priority is survival.
- You won’t find me at mommy and me classes. I love spending time with my kids. Unfortunately, mommy and me classes are not suited for moms with chronic pain. A lot of mommy and me classes require mommies to bend and move and pick up their kids, not sit nicely on the floor. I recently tried a music and movement class with my youngest because he loves music. I had to drop the class because he was too shy to participate so I had to carry him for many of the dances. It took me days to recover from the class. My husband is the one who does “mommy and me” swimming. I’m not lazy or embarrassed to be seen in a swimsuit, I just can’t physically handle the class.
- I live in the present. I enjoy every good day and focus on making memories with my kids. I don’t focus on what I can’t do, instead, I am content with what I can do.
- I don’t sweat the little things. I used to stress out about every little detail and get down on myself if my house was messy or I didn’t get enough exercise or cook enough healthy meals. Now, I’m content with every little thing I accomplish because I know how difficult my accomplishments can be when I’m not well. I don’t compare myself to other moms. How can I possibly compete with a person in a healthy body?
- I have a positive attitude. Being in pain or sick every day can be draining. I literally can’t remember the last time I had a day when I felt 100% well. I can tell you when it was – more than eight years ago, before I got pregnant – but I have no recollection of that feeling that most people take for granted. Thankfully, I’ve always been a positive person so I don’t let it get me down for long. I do allow myself room to feel sad about things I can’t do, but I always revert back to positive. It is truly my saving grace.
- I am stronger than I look. I’m no particularly tall or muscular. My body attacks itself. There are days when I am just trying to survive the day. There are days when I am truly enjoying my blessings. The fact that I live in a body that is not well and continue to move forward every day with a positive attitude makes me strong. I have an internal strength that powers me through life.
I don’t share my chronic illness woes with most people. Only my closest friends know of my condition and of those, only a select few know how much I struggle. I would guess most people with an invisible illness do that same. I’m sharing these chronic illness facts in case there is someone in your life living with chronic illness. They may not share their challenges, but this can help you understand them just a bit better.
And maybe, the next time you see a “perfectly healthy” person being “lazy” you won’t judge them. Maybe they are fighting a battle you don’t know about. Or, maybe they’re just lazy, but really, what difference does it make in your life? It is far easier to just live and let live than to judge people based on a few insignificant observations.