It's ok not to be ok - but is it?

They say that it’s okay not to be okay. I wish it were genuinely true - except... I’m not sure it is. Or at least I’m not sure that we are anywhere near that statement actually been true enough for us to feel safe and confident in expressing it whenever we need to. Why else would writing an honest blog be so difficult? Or managing relationships with colleagues at work? Or trusting medical professionals to believe you and take you seriously?

If it were actually okay not to be okay then...
  • we wouldn’t have to write it as a hashtag at the end of a mental health post
  • we wouldn’t feel like part of a special club when others acknowledged it
  • we wouldn’t have to remind each other about it, or justify it 
  • we wouldn’t pretend that we were better than we are
    • and hide when we can't pretend
  • we wouldn’t EVER bow to social convention and say that we were okay
The fact is, I’ve found that not everything wrong with us is always okay to talk about. 

My husband and my friend had to force me to see the doctor a couple of days ago. I've had a nasty cough since Christmas Day, which, along with a sinus infection, has exacerbated quite a lot of my other symptoms. I didn't want to go. I have had so many negative experiences with doctors that I have been made to feel like a hypochondriac, and was terrified that complaining about something so minor would only further cement that perception. Yet I was really struggling - coughing fits and sore joints are not good neighbours, nor are sinus infections and chronic headaches, or shallow breathing and anxiety, or high temperatures and orthostatic intolerance. But still, I didn't think that there was enough wrong with me to warrant a phone call to the doctors' surgery. And then I got there. And they did a thorough set of checks, including peak flow meters and lots of "deep" breathing, and the GP was prescribing me antibiotics and steroids and extra inhalers for wheezing and a crackle in my left lung. A genuine medical problem that will - hopefully - be fixed with some rest and some medicine (not that introducing more meds into my system is a simple process. My body likes to react to everything, so I will invariably feel worse before I feel better, but must trust that it will be worth it).

Such a different experience from, for example, when this all kicked off. My GP - who thought that "joint hypermobility syndrome" (which was already on my notes) meant that I was a bit bendy - was convinced that it was all in my head. Being asked whether your pelvic agony is "a physical manifestation of your not wanting to go to work" taught me that, firstly, she hadn't believed me when I described how I adored my job and, secondly, that she was not going to be the primary medical professional who helped me to navigate this sudden onset of Hypermobility Spectrum Disorder (HSD) - part of the spectrum of hypermobile Ehlers-Danlos Syndrome (hEDS). The relief when EDS UK worked with the RCGP to put together an EDS Toolkit - found at https://www.rcgp.org.uk/eds - which I could direct my doctor to, has thankfully made a difference to some of our interactions. More on HSD/hEDS in my next post, I think!

Trying to raise mental health concerns with my GP this summer were also not "okay". Instead of taking me seriously, she just told me that I "need to carve out a purpose". While, of course, this is absolutely true, it isn't as easy as that and generally requires help from one or more mental health therapies, medications, as well as lifestyle changes. Advising me that exercise and fresh air are helpful was about as useful as a glass hammer - I get out every day but my body won't allow anything more rigorous, which is obvious when you look at me. In the end, I found out that I could self-refer through the IAPT system by visiting a different GP, who could not have been more supportive and compassionate.

As for me, even I fail to put this saying into practice, in even the most supportive of environments. We had a day out with some old friends recently. Friends who know what I'm going through and are completely understanding. Friends to whom I don't have to, or need to, pretend. And yet - I still did. I was so embarrassed that the disability transfer I had requested would take 40 minutes to arrive that I insisted on walking the half mile that I knew I shouldn't. I didn't listen to my brain, or my body, or my friends and family - I was so worried about being a burden that I walked. That night, once I was home in bed, the flames of agony had me crying into my pillow. Every movement the next day sent pain shooting through every major joint that I had overused, with exhaustion and chronic headaches added in to really teach me a lesson.

It was ok not to be ok, but *I* wasn't ok with it. I'll need more help before I am.


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