I’m a sick grrrl. I have a few rare, incurable, genetic bone and autoimmune diseases — the details of which I won’t bore you with. So far, I’ve had a wrist permanently fused, I’m infertile, and I’m now facing potential amputation if my doctors can’t get my blood flow under control soon.
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It’s so easy to slip into a cycle of hating your body when it’s not working properly. It’s easy to feel bitter, alone, resentful and just all-around negative and depressed when your body is unhealthy in ways beyond your control — all of those feelings are completely valid.
Still, sulking is unhelpful. You can choose to dwell on your illness and spiral down into depression, or you can rise above it and not let it get the best of you. I’ve chosen to stay positive and live my life in spite of my diseases, which is totally more easily said than done. Here’s how I do it:
1. Process your diagnosis
Grieve. It’s okay to be sad. It’s normal to be angry. When I was first diagnosed, I felt as though there was suddenly a huge separation between myself and everyone I knew — I was ill, and they were healthy. I felt jealous and bitter, and very alone. Allow yourself to feel these feelings, but don’t get stuck dwelling on them.
2. Stay grateful
Feeling sorry for yourself is fine in small doses, but whenever I start slipping downhill into despair, I remind myself that I need to be grateful that I’ve gotten the care I need. Yes, it’s expensive. Yes, it’s a hassle — but I’m alive, and that’s amazing. There are people with my diseases all over the world who can’t get healthcare for one reason or another, and that’s awful. Keeping my situation in perspective helps me to stay positive.
3. Focus on the good
Focus on what you can do, rather than what you can’t do. For instance, when my wrist was permanently fused, I felt like an absolute freak of nature, and I had to teach myself to do everything with a now-immobile wrist. I was clumsy and frustrated for about a year, but instead of cursing my wrist and becoming depressed about it, I decided to focus on the things in life that made me happy. I celebrated my small victories — writing by hand again after months of practice, being able to chop vegetables, learning how to type on a keyboard with an immobile wrist. I went out on dates with my husband and just generally did things that made me happy, which brings me to my next tip…
4. Don’t let your diagnosis take over your life
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This is often easier said than done, especially when you have an illness that affects every aspect of your life… but you can’t let it become your entire life. You have to move on. You have to keep pushing and decide to live — otherwise, your illness wins and your quality of life suffers.
Nurture your relationships with loved ones, and don’t spend all your time talking about your illnesses. See a therapist if you need help processing your diagnosis — your friends and family are there to support you, but don’t be draining on them. Talk about positive things. Do things that make you happy. Your diagnosis is part of your life, but don’t let it become the star of the show. You are in control. It’s your life. Live it.
5. Self-care, even when you don’t want to
When I was diagnosed with my latest diseases, I went through a period of hating my body. I felt like it had betrayed me. I didn’t want to look at myself. I didn’t want to put on makeup anymore, I lost interest in fashion — I was just filled with loathing for it. Those feelings are valid, but eventually you have to embrace your diagnosis as part of you, but not a defining part. Even if you don’t feel like it, you need to take care of yourself. Eventually, it starts to seem normal again. Hating your body is ultimately illogical and unproductive. It’s sick, and it needs love and nurturing.
Being chronically ill is no fun. It’s easy to feel sorry for yourself. It’s easy to hate your sick body. You may feel angry, unlovable, misunderstood, isolated, etc. I know I felt that way, and I do sometimes still. The important thing is to not let those feelings define you. Give yourself time to process your diagnosis, and move on. Live your life, and take care of yourself even when it seems difficult.
You are so much more than your illness. Stay true to who you are and don’t let it take away all the beautiful things that make you who you are.
Great article. I have an incurable genetic disease as well and some days its harder than others not to lose the plot over the limitations, but in general I get on with being super stubborn and finding ways around my limits so I can still enjoy my passions, like art and gardening. It’s hard but the alternative is what? Curling up, depressed and miserable til I die? I’d rather make beautiful things and watch nature.
Wishing you all the best with love and support as you cope with your own health <3
Thanks for this post! It could not have come at a better time for me as I was diagnosed with an autoimmune disease a month ago. First though, I have to say I’m not a massive fan of the title of this post. “Stay positive”, or “be optimistic” is what some people said to me just when I was at the worst stage of anger and fear right after the diagnosis, and it actually made me even angrier. I was confused and terrified in the face of a lot of uncertainty – I’d just been handed this diagnosis and had no idea what would happen with my life (I’m still not entirely sure as I’m still in treatment), how could I be “positive” or “optimistic”? “How to deal with” would be more appropriate, I think.
BUT I completely agree with the other points, especially 1, 4, and 5.
About 1): Taking time to process a diagnosis is key. People will give you “stupid” advice that’ll make you want to lash out at them. As I was in my hospital room crying because I was terrified that I’d have to give up my life as I knew it (career, sports, travelling…), a nurse told me “Sometimes life shows us a stop sign”. I very nearly killed her. I didn’t want a stop sign. I wanted my life back! I yelled just that at her and while it may not have been nice, it helped. It also helped that my husband validated my feelings. He said, “as long as you’re angry that’s good because it means you’re fighting”. So, accept those feelings and live them out. But if you realise you’re living them out for too long and can’t come back from those dark places, seek help.
About 4): There are some people who live for their disease, and they are not happy. I’ve seen them in hospital. See what you can do outside of your disease. If you feel like doing something, ask your doctor if it’s ok and if they say yes, go for it. I really wanted to swim, for example. It’s one of my key coping mechanisms, when I have problems I “swim them out” – it really helps me focus and clear my head. I was worried it would be horrible or I wouldn’t be allowed, but the doctors OK’d it and it was the best thing I could’ve done.
About 5): I’m still struggling a bit with this. My body is changing as a result of the medication I’m on and it’s no fun at all. Sometimes I hate looking in the mirror. But taking care of myself does actually make me feel better!
“Hating your body is ultimately illogical and unproductive. It’s sick, and it needs love and nurturing.” YES!
That last one is SO difficult, but you’re right- SO important. Being patient and forgiving with yourself, and not caving to external pressures to “buck up” and “push through it” is crucial to surviving with chronic illness. The best way I’ve found to do this is cut out of my life anyone is more judgy than helpful, surround myself with positive self-care messages, and have regularly-scheduled massages, me time (to read, usually), hair cuts, etc. (as a time when someone else is making all the decisions and I can just let go). I think you’re incredibly brave for functioning, loving your body, and facing the possibilities head-on. Thank you for sharing that strength with the rest of us.
To piggyback on your third point: Some people use an imaginative term to describe their change in body status. I’ve heard people use terms like “Wizard eye” or “robot leg” to describe their atypical body parts because it amuses them, and they like throwing people off guard. A friend of mine has a nickname for a organ affected by a chronic illness, so she can say that “He’s acting up again” or “He’s been behaving himself lately.” Obviously using imaginative nicknames for body parts is a personal choice!