I was diagnosed with Ehlers Danlos Syndrome in my early 20s but I have experienced symptoms all my life. Ehlers Danlos Syndrome is a connective tissue disorder relating to a lack of collagen in the body, this causes joint hypermobility, stretchy skin, and fragile body tissue. Because every system in our bodies contains connective tissue, having faulty connective tissue causes a lot of problems. Many people with EDS suffer with cardiac problems and stomach disorders along with many other illnesses related to problems with their connective tissues.
For me, it began with frequent dislocations as a child, which progressed into widespread joint pain and cardiac problems amongst other symptoms as I got older. Growing up, I also developed frequent infections which later led into a diagnosis of an auto inflammatory condition. The day to day struggles of living with multiple chronic illnesses have taken their toll on my mental health over the years. However, I have found certain things help me cope when chronic pain and the variable nature of chronic illness gets me down.
The first thing to remember is that coping with chronic pain is tough. There are days where I do struggle with it quite badly, and that’s totally normal. Sometimes with chronic illness there is a perception that you’re a failure if you’re not seen as fighting your illness, or being strong all the time. In reality, however, putting yourself up to impossible standards isn’t realistic. I’m a bit of a perfectionist so having a condition which does limit my ability to complete certain tasks can be incredibly frustrating. But remember it’s also okay to be frustrated by your pain. It’s a completely normal reaction to a tough situation. Just know that it pain and health aren’t linear so for every bad day there will be good days too.
Due to my condition, I also get bouts of brain fog which often feels like articulating thoughts and functioning is like wading through treacle. When it comes to brain fog, I find breaking tasks down into smaller components can make them feel a lot less overwhelming. I also use this to help with managing chronic pain as pacing myself and breaking tasks down into manageable chunks means that I don’t end up overexerting myself and getting burnout.
Another really helpful thing I find is spending time in nature. I often find when my health is getting me down or I’ve had a particularly bad flare up, it can make me feel pretty low. When that happens, there’s nothing that helps me more than going outside and taking in the sights and sounds of nature. I’m an ambulatory wheelchair user so sometimes I can walk using a stick and sometimes my carer takes me out to the local area in my chair. Having time to breathe in fresh air and just exist is one of the most relaxing things for me and really helps with my mental health. I find sitting outside somewhere fairly quiet (if you can) and just listening to the birds and the wind in the trees around you is a good way of being present and takes you out of your own head for a while.
As cliché as it sounds, having a hobby or something to focus on really helps. For both mental and physical health having something to pour your time into is a great thing for overall wellbeing. When I’m spending time outdoors, I like to dabble in nature photography. I have really gotten into photography over the last few years, I particularly enjoy macro photography as well as capturing sunsets and landscapes. Being able to produce something creative is really beneficial for my mental health.
With chronic illness the unpredictability can sometimes be the hardest thing. One day you can feel relatively fine and the next you could find yourself having to deal with a flare up. If this happens I tend to try and distract myself. So taking time out to watch a favourite programme, listen to music or taking time with a bit of self care really helps. Doing a face mask or just anything relaxing really helps and can take your mind off pain or whatever else is happening.
The main advice I would give for anyone dealing with chronic illness is just make sure you prioritise both your mental and physical health, because often with illness and the constant medical appointments it can be really easy to neglect. But mental health is equally as important and helps with the general resilience needed to cope with a chronic health condition. Taking a bit of time out of your day to do something that makes you happy and finding your focus can make living with chronic illness a lot easier.