The old, “You don’t look sick!”
I don’t look sick. You’re right. 99% of the time I don’t look sick. I’m a bit paler. Unless I’m using a cane or a walker, you’d have no idea that I have 40 lesions in my brain and 2 lesions in my spinal chord. And that my brain is currently inflamed.
You wouldn’t know I lost part of my vision, half of my tastebuds (split right down the middle of my tongue), that I have muscle spasticity, that I find it hard to smile due to facial spasms and cheek numbness, that I can’t walk in a straight line. I sometimes forget my name. I sometimes don’t remember who my mother is. I sometimes don’t remember my cat’s name, or my own age, or where I live.
And after getting to know me, you may assume I’m lazy, dramatic, and simply uncoordinated.
But, I was a dancer for ten years. I have a full scholarship to a top research university. I was accepted into a MA program without even applying. I wouldn’t wish my illness on anyone. I really love my cat. MS sucks.
Invisible illnesses suck.
MS isn’t the only invisible illness. I have a few of them. You and I may be kindred spirits in our chronic pain. Fibromyalgia, Chrons/Ulcerative Colitis disease, clinical depression, Scleroderma, anxiety disorders, Sjorgren’s Syndrome (sp?), are just a few on my list. You may have others. You aren’t alone, my friend.
And both of us likely experience the same nonsense from strangers. Ashley Ringstaff writes in MS & Things People Should NOT Say (and this applies to other invisible illnesses), “I think we have all dealt with people making comments, or just doing something that is bothersome to us… as time went on, and when I was having discussions with family, friends and sometimes-just acquaintances, there were things said or done that really bothered me and I had to bite my tongue and just nod and let it roll off my shoulder.”
We’ve all been there. Can I get an amen? “AMEN!” Ashley, you aren’t alone!
How To Approach Us
You may mean well. Really, strangers who don’t have an invisible illness, you probably do mean well. And I’m not holding this against you. It’s just, well I can only speak for myself- I get so tired. I get so tired of people telling me of instant cures and miracle herbs and others who simply refuse to see the suffering in my eyes. If my leg was broke, they could sympathize. But because I’m not in a cast, my issues are therefore not relatable, and more importantly… invisible.
Having loved ones deny that my illness exists is the worst feeling in the whole world. Family support is the most important thing. A parent is supposed to care for their child, especially when their child isn’t able to walk and cries from so much pain every day when her little feet touch the ground in the morning and when she empties her mind to sleep at night . When their child can only open their hands after long soaks in mineral baths. When all their child lives is in pain. That’s all they know. That’s all they’ve ever known and all they will know. I’m lucky to know the difference between a good parent and a bad one.
Being called a liar, denied affection, downplaying the severity of the symptoms, made me question to this day my own self-worth, self-esteem, sanity, and worthiness of love. I think this is the root of a lot of my current day issues, but I’m not my own psychotherapist. I’m not the one with the degree. I can only say what I feel in my heart.
What’s It’s Like
Spoon metaphor. I first heard of this from a friend whose mother had multiple sclerosis. At the time, I wasn’t diagnosed and I didn’t think I had it. It was years before. It’s funny how the universe works. He was a filmmaker doing a documentary on my life living with my other invisible illnesses. Anyway, back to the spoon metaphor. I’ll try to explain.
Each day you’re given 10 spoons.
Each represents an action one can do. That seems like a lot of spoons! Wow! I can accomplish so much, right?
Okay here we go.
Spoon 1• Getting out of bed.
Soon 2• Changing out of pajamas
Soon 3• brushing teeth/hair
Soon 4• Shower
Soon 5• Getting dressed
Morning’s almost over and the spoons are half way done!
Spoon 6• Making breakfast (this is a tough one. I usually forgo it.)
Spoon 7• Eating breakfast
Spoon 8• Cleaning dishes
Spoon 9• Checking email/voicemail and responding (socializing is hard.)
Spoon 10• Feeling out of energy, not even in the car yet. Drag myself to car. Work time? Oh God.
Wow, that went by fast. I’m already exhausted. I think it’s time for a nap. A painkiller. And a prayer to Jesus. I’m out of my days of spoons. I’m done.
Chronic fatigue, which comes with a lot of autoimmune diseases- FTW!
And when we get like this, negative comments may be taken more to heart. We’re already stressed, fatigued, and feeling pathetic.
What To Say
Ringstaff lists a bunch of things to NOT say to those with a chronic invisible illness. These are some that stuck out to me and what I think may be the most relatable to all who have invisible illnesses. Remember, you aren’t alone.
I think the most important support should come from family and friends. Like I mentioned earlier, the understanding from a parent can go a long way and help the child/adolescent/adult feel more comfortable. Face it- we’re sick and we may likely be sick forever. And, often there is no cure. And often, we feel isolated enough and confused and even angry at our circumstances. We wish we had more damn spoons. SPOONS!
Ringstaff listed a few things in her article I’d like to include here.
- “You don’t look sick”
- … Why thank you! I wish I didn’t feel sick either!
- “Well aren’t you taking your meds? You’re cured!”
- ... Sadly, Madame, side effects can be severe, and there may be no cures for our illnesses. We just try to manage them to the best of our ability.
- “Are you contagious“
- … No, but if I was I would purposely sneeze on you for being so stupid to think I’d purposely infect you.
- “What gave you ABC”
- … I don’t know. A gene? The pollution? God? Satan? The lottery?
- “Are you sure you have ABC”
- ... Yes. I went through a spinal tap (OW!). Brain, neck, and spine scans every three months to track my progression for over a year. Blood tests. Nerve samples. Four different doctors. Okay, still not convinced? Want to see a picture of my brain? It’s lit up like a Christmas tree. The lights are my brain inflammation.
- “Why are you dragging your feet and walking slow?”
- … Because I ran out of the spoons. I’m tired and my feet are numb.
- “Stop making an excuse”
- … I’m just trying to explain so you understand what I’m going through to educate you.
Education, Empathy, Distance, Or Nothing
The positives of having an invisible illness include finding out who your true friends are. They are the people who keep texting you even when you can’t go out to parties with them or keep canceling plans. They are the people who read books on your illness to try to understand what you are going through. They are the ones who offer hugs (light hugs. Tight ones may cause more harm than good.) They know you’re probably low on money and can’t afford to even do a lot of going out because of doctor’s bills. They are the ones that know that no matter what, you LOVE THEM. Circumstance just prevents having a conventional relationship anymore.
Some people give up. Can I blame them? No. I’m a handful. I know that. I have a lot going on. Mood swings, hating my body for what it does to me, feeling helpless, feeling worthless. All this is projected, no matter how hard I try to fight it, into my relationships. Because at the end of it all, I know I’m failing my friend(s). And it makes me feel guilty. Needing constant reassurance can be a burden on someone. They distance themselves. Then they disappear. A part of me is happy they are gone. It’s one less socialization I have to deal with. Talking takes a lot of energy.
You win some, you lose some. You try your best. You take your pills. You “stay positive”. But at the end of the day, living with an invisible illness is tough. It’s tough. There is a widespread lack of support in the disability community. I’ve gotten dirty looks from people when I use my disability parking permit. It’s life. We get accustomed to it after awhile.
But, please, try your best to support us. Try to make us feel less alone. Try to make us not feel worse than what we already feel. Love us for who we are, despite our illness. For some, our illness defines us. It’s an intrinsic part of our identity. It limits what we can and can not do each day. I fall into that category. I’ve always had one sort or another chronic invisible illness.
For others, their illness does not define that. It is simply a part of them, but doesn’t weigh as heavy on every day life. They keep their prior identity intact to the best of their ability.
In either case, LOVE is key to dealing with illness, staying strong through illness, and healing with illness.
(PS, I worked really hard on this post)