The Most Difficult Parts of Receiving Treatment for Chronic Illness

On the eve of having a surgical procedure to try and treat an aspect of my condition, I’m anxious.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Anyone would think I’d love to take a week or so off work and be forced to take it easy, but I’m worried about how hard it’s going to be on the rest of my body. I have postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. A really difficult thing with a chronic illness is pacing. Doing too much can make you too ill to get out of bed for a few days, doing too little means you body becomes deconditioned which can make you too ill to get out of bed for a few days. It’s a vicious cycle. And after any kind of treatment you have to rest up, but try not to rest too much. After this procedure (a blood patch to hopefully help seal up a CSF leak) I have to take it very easy for six weeks and I may have to have three of these procedures, meaning I’m taking it easy until the end of April. I can’t lift or bend normally as it really affects my POTS and my pain, but after this procedure I am strictly not allowed to, I won’t even be able to push myself around in a wheelchair or walk the dog in case she pulls too much, meaning my regular exercise goes out of the window. This worries me, as the last time I just stopped doing things was before I was diagnosed and it was the worst my health has been. I couldn’t get out of bed and my mental health suffered majorly. So I’m worried about finding a way to keep my pacing strong without risking the effectiveness of the treatment and/or a major flare up.

Another difficult thing with chronic illness is that treatments aren’t guaranteed to work or even help. I am worried that it won’t work. It’s taken nearly a year to get my POTS stable enough to have the intracranial pressure monitoring (which I had in November) to find out if I did have a CSF leak, get diagnosed with a CSF leak and find a way of treating it. If it doesn’t work, I will have wasted another four months and three procedures to be back to square one. I worry if it doesn’t work that I will have let myself, my family and my doctors down as everyone has put in their best efforts to help me get rid of my “everlasting headache,” as I like to call it, and my body just doesn’t want to respond the way it should. But we all need to stop feeling so guilty for being ill, it’s completely out of our control.

But the most difficult thing I’m finding about getting treatment as a patient with chronic illness is that, if it does help, friends and family think you’re am cured. And if it doesn’t help, there’s an expectation that it should have helped. My last operation was just an invasive investigation yet people who knew this still thought it would’ve made my headaches disappear. I understand the notion, of course. If you break an arm or a leg, it’s painful, you go into hospital, they plaster you up, you spend six weeks recovering and it’s fixed. When you have chronic illnesses, however, there’s so much more to contend with. I manage my POTS with medication but I rely on it and if I forget a dose I know about it. My EDS causes major fatigue, widespread pain, unstable joints and and gastrointestinal issues and unfortunately I am going to have to live with those symptoms for the rest of my life. Whether this treatment helps to get rid of my “everlasting headache” or not, I will always be chronically ill.

Let’s say you went to the doctor for a chest infection and you happen to also have a broken arm. The doctor gives you some antibiotics which cure you of the infection, but your arm is still broken. My story is just as simple, in a roundabout way. I went to the doctor for a headache and (after two years) they found the cause of the headache. I happen to also have two long-term conditions called POTS and EDS, they did some treatment for my headaches and one finally worked, but I still have POTS and EDS.

With chronic illness, I am often made to feel that if I go into hospital for something I should come out and all my problems should be fixed. But remember you can’t expect antibiotics to fix a broken arm, so don’t expect a procedure for an small aspect of a condition to cure someone of a chronic illness. It’s called “chronic” for a reason.