” How do you do it?” is one of the most common questions I get asked from people who have just found out about the extent of my illnesses.
The honest answer is, I don’t really know. Chronic illnesses are weird like that, for a lot of people they just creep up on you, you wake up sick one day and don’t get better. Some people stay the same or have a long period of stability, some people get progressively worse, some people relapse and remit over time.
In my personal experience, my chronic illnesses have built up over time, at first there was only joint pain, then the coeliac and with that came a distinct lack of energy, then came the crohn’s with its nausea and stomach cramps, then I was officially diagnosed with arthritis, then I had my jaw surgery. then came the cluster headaches. I dealt with things as they came along and for a long time i tried to keep living my life as normally as possible, I kept going to school and then college, managing my pain any way I could until it just became impossible to do those things. When I look back over the last 19 years I genuinely don’t know how I have got to this point. So many things have happened, hundreds of tests, hospital stays, procedures, IVs, surgeries and injections. I have failed multiple medications and treatment plans and I have had constant debilitating pain in one part of my body or another through all of it.
When you stop and think about everything you are dealing with things it can be really overwhelming and there have definitely been times when I have thought I would stop functioning, where I couldn’t see how I was going to keep going for even another day, and then a new day comes, and I get up and brush myself off and go on with life. While you’re in the midst of the pain it can be difficult to see how much you’re actually going through, it’s almost impossible to take in every emotion, every bit of physical pain just merges together in an endless slurry. Its only when you look back with hindsight you can really see how much you’ve been through and for me those are the moments where I struggle to see how I am going to keep going.
The problem with chronic illnesses of course is that they never stop, so even when you stop and look back you’re still not seeing the full picture because it isn’t over yet. I think its because of this that I struggle to verbalise how I “do it” or really take in exactly what I have been dealing with. What I will say is that a lot of people think they would never be able to cope with a life like mine but the truth is when you get sick you aren’t given a choice, you have to fight if you want to keep living and that fight won’t suddenly stop. Most people would be amazed at what they could cope with if they really had to do it.
Generally you try to make the most of the things you can control, you try to forge a life for yourself the best that you can, you attempt to maintain relationships and surround yourself with people who love and support you. There is no secret to getting through or dealing with chronic illnesses, no secret to dealing with daily severe pain or coming to terms with knowing you won’t get better, but I promise you in the majority of cases you will find a way through. Putting one foot in front of the other is a good place to start. It’s all I’ve done for the past 19 years and it has got me this far. The one good thing I can say about living with chronic illnesses is it has taught me to be grateful for every day and every opportunity, because I don’t know when my last chance to do something will be. My health has been deteriorating steadily for a long time and I have had a few “lasts” that I didn’t know were coming, like my last 8 mile walk, my last meal in a restaurant without worrying about getting sick, my last pain free day, and I will have more “lasts” throughout my life, and although thats incredibly hard, it has taught me to enjoy every last second that I can.
Chronic musician 