Chronic illness is relentless. It will throw one thing after another at you, without pause or mercy. Unlike an acute illness, there is just no end date. Your entire life becomes hostage to your illnesses. You may no longer be able to do the things that make you, you. In my case, stopping my law practice which, to this day, I have not really come to terms with.
As my husband says, there is only so much a person can take. In my case, in the past 22 months, I have seen death and come back at least once. I have been in an ambulance over 20 times. Symptom after symptom, medical appointment after medical appointment – my illnesses have become my full time job. I have had an emergency surgery 2 weeks ago, got an EDS diagnosis (which deserves its own post) that made me euphoric and sad in equal parts.
Just as I was starting to come to terms with this and recovering from my surgery, I developed a fever and tested positive for corona. Shielding for a year has all come to naught. I am typing this while shivering from cold, after having gone through a sweating session in the morning. My breathing is difficult and my head hurts like hell. I am terrified about the damage this is going to do to my already battered lungs & broken body.
I really don’t know how much more I can take. It feels endless; like none of this is going to stop – the hospital visits, the tests, the treatments, the struggles that I put through my family (especially my husband and son) – none of this. It is just so relentless, like the red storm in Jupiter.
Chronic illness can drain the lives out of the people around you as well, especially a partner or parent who care for you. They have drained my husband’s energy and affected us all mentally as a family. My husband has to cook, clean, help our son with housework, care for me & do his job. I worry about him a lot. Just the fact that every morning he choose to be with me and not run away amazes me.
Chronic Illness can take away everything from you – you job or profession, your friends, your family and sometimes even your will to live. It can be overwhelming, relentless and all consuming.
There are two ways I have found so far to cope with all this. The first one is to breathe. Breathing deeply, in and out, grounding myself in this moment and not equating this moment or all that has happened so far with all that may happen in the future – that is my coping mechanism.
The second one is to find a community. There is a fantastic community on twitter at #NEISVoid. You can find people with every rare disease under the sun and it is one of the most non-judgmental, supportive, understanding group of people you will ever have the fortune to encounter. Feeling a sense of community helps reduce the isolation that chronic illnesses bring about.
I have found this helpful in the past 24 hours the most – when I am stuck all by myself in my bedroom and feeling so lonely, as I cannot even hug my boys. I cannot share too much with my husband who is, himself, struggling to cope with all that has been thrown at him. So #NEISVoid has been my saviour and coping mechanism.
I was (and probably still am) very close to giving up hope, because hope is a very dangerous thing when you have a chronic illness. It is hard to foster or hold on to hope when things have gone from bad to worse for years and there seems to be no way out as the illness is chronic, with no cure. The closest I have come to hope is to not feel like all is lost. While I allow myself to wallow in pity, frustration, anger and fear from time to time, eventually I take a deep breath and tell myself that I am still here.
Living with chronic illness is an eternal dance between grief and hope.
So I grieve, I hope and I repeat this process. There is no alternative. This is not bravery. This is just a survival mechanism.
I am a burned out international lawyer & mother with Fibromyalgia and anxiety, trying to re-discover my identity.
