Updated: Jul 13, 2019
I cannot stress enough the importance of having support, and not just people who mean well, but people who contribute in a positive way towards your physical and mental health while you navigate your way through chronic illness. My family has pulled me through this, and still do.
Hands down. Whether is has been bringing me weird food I craved while in hospital, dragging me out of bed and making me sit in the sun when I was down, or just simply being there with me.
It wasn’t always that simple though. As I have alluded in previous blogs – my diagnosis journey was long and winding. It’s a tale similar to many an EDS-er. IBS first, then Migraine, then a heart arrhythmia. Then came the POTS. That was when things really started going topsy-turvy. It's kept getting weirder since.
At the beginning of the tale, my life was busy and ‘normal’, I had lots of friends, always someone to talk to, I never felt lonely or like there was something missing. But those friends dwindled. I learned quite quickly who really cared, who was just interested when something ‘exciting’ happened (if you call an E.R. visit exciting), and who really just "ain't got time for that s***". All of a sudden loneliness was a thing in my life. I had very few people to talk to.
While this gradual loss of companionship occurred, I also grappled with trying to find doctors that would take me seriously. Without a full set of diagnoses to explain my problems, doctors often either saw me as a ‘mystery’ which they couldn’t be bothered solving, a person who belonged in psychiatric care, or the worst: a malingerer. I was physically abused by paramedics, denied care by E.R. docs, and dismissed by specialists of various varieties.
To top that off – the work environment I was in when my health took its worst turn was toxic. I had a boss who, while appearing to care deeply about me, really couldn’t handle the fact that my health concerns had become disabling. I also had a colleague who had zero respect for me. She saw me as “a pathetic young person who wouldn’t stop complaining about her health”. Which is ironic, because I barely said 'boo' about it. Accommodations for me to continue working were refused, and ultimately I was forced to leave.
I have eventually solved most of these problems. I have found a healthier work environment, chosen friends and family to be around carefully, and picked out doctors that take me seriously and truly want to help. And I am in a hugely better place for it. These are the principles I try to follow:
If they mind, they don’t matter.
When it comes to friends and family members spending time with you; if your health concerns get on their nerves, annoy them, or cause them to cancel on you; bye, Felicia! They don’t matter. One of two things will be true: there are already people in your life to whom these things don’t matter in the slightest and they just see you for you. Or, you will meet people like that, and soon! They're out there, I promise. I know this can be hard if long time friendships or family members are involved. It’s not always an easy decision to make, but we ain't got time for toxic people in our lives. It feels so good to let them go.
Doctors have to care - a lot
Chronic health conditions are hard for doctors to treat. They get frustrated and let down by the fact that they cant ‘fix’ their patients. Dr Rob, writing “A Letter to Patients with Chronic Disease”, said “You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits.”(prohealth.com)
To me, this is no excuse for a low standard of care. And Dr Rob doesn’t excuse it either. However, it explains why some doctors, accustomed to being able to cut out, medicate, or rehabilitate a problem in front of them will panic internally when faced with a chronic patient and end up giving a low standard of care.
We have no control over these doctors. Sure, we can call them out and we can complain. There is a time and place for that. As I said in my previous piece, self-advocacy will sometimes require you to. But ultimately you are not going to change a doctor. So save that hard-earned energy! Instead, develop a health care team of doctors that you are able to trust.
This takes time. It took be the better part of 3 years to get to a place where I was happy with my medical team. But it’s absolutely worth persevering. Social support groups on Facebook etc. are a great place to start for recommendations in your area. Also once you find one good specialist – they tend to know all the good ones. Ask them to recommend who you should see for x, y, z problem and that should lead you to the right place.
A toxic work environment is a toxic health environment
If you work, or you could apply this to your daily routine activity where you deal with people (even online), keep an eye on the environment around you. It crept up on me. My work environment was great when I started, and stayed that way for a long time. However over time, suspiciously in line with my health worsening, it became toxic. This had direct effects on my health. Stress is tied into one's physical health. That is NOT to say stress CAUSES ill-health.
If your work mates are not on your team any more – first see if you can fix it by addressing the problems you identify. You never know, it might work. Don’t try this for too long though. I did. Once you’re pretty sure this is just bad news and you’re not happy, get out of there. It can be hard to let go of a work place as it can be hard to let go of friends or family. But just like the former, if it was a damaging situation, it will be so freeing to let it go.
A massive shout-out to Disabled and Here for providing the stock images I used in this piece. I'f you'd like to find out more about their project, click here.
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