A few weeks ago I took a massive step into the world of accepting my disability. The last few years have been getting progressively tougher as far as EDS/POTS go, and as ever, I have been stubbornly refusing to admit defeat. I pushed and pushed myself to do all the things I ‘should’ have been doing; I hid the typical pay off for such activities (think of it as borrowing 5 days worth of energy to manage the trip outside of the house or food shop); I refused to push for medical help for fear of being accused of attention seeking behaviours, and I would barely mention anything to those around me for fear of the same reaction.
I have heard countless times from other EDS sufferers that their problems were diagnosed as mental illness. Depression, Anxiety, and even personality disorders are common – the logic of these decisions seeming to be ‘you can’t possible have that much wrong with you, you must be mental’. Unfortunately when your collagen doesn’t work properly anything and everything can be affected!
Mental health problems for me were a huge barrier to accessing help for both EDS and POTS. Due to childhood trauma and difficulties with my family I developed depression, PTSD and anorexia. These 3 diagnoses have been fairly acute at times, and it has been an up hill battle to attain the right help to get better. What I hadn’t been told was that someone had also labeled me with Borderline Personality Disorder. This particular diagnosis made it almost impossible to get any help at all. Every plea for support led to people ignoring, disbelieving and refusing to put help in place. I was repeatedly told I would get dependant on the system, and that there was nothing anyone could do for me. This also extended out into the treatment of my physical health problems, and it wasn’t until I fought to get the diagnosis removed from my records (and changed GP) that I was finally at least listened to. I had spent 11 years of my life repeatedly asking for help with pain, 4 years fighting to see a rheumatologist, and 6 years pushing to get an assessment with a physio! I would love to tell you that all of my problems getting help were magically fixed with the removal of BPD from my records, but it is rare to meet a doctor who will take the EDS symptoms seriously.
With all of the above in mind, it feels particularly bizarre that I have been given a recent assessment with the social services, and that the person who assessed me saw a genuine need for a lot of help with my day to day living. She will be organising direct payments for me, and I will essentially be employing someone to do the exact same job I had to give up not long ago.
The assessment itself felt odd. I am rarely honest with those around me about what I can and can’t do. People don’t know that having a bath or shower exhausts me, causes palpitations, fainting and often leaves me stuck due to my joints going out of place (I manage it once in 5/6 days at the moment, and managed to sprain my wrist trying to get out). People don’t know that I struggle to wash my hair more then once every 4-5 weeks due to pain, subluxation and fatigue. I don’t tell people that I struggle to cook anything for myself now (having gone from cooking all meals and baking twice a day for years) or that I often can’t eat much anyhow has my jaw pops out of place and my swallowing has gone to pot. I barley leave the house, I rarely have the energy or lack of pain to do simple cleaning tasks, and I struggle mentally due to the adjustments I have had to make so quickly. I can’t tell people all of this and more because I am petrified of being labeled as lazy, attention seeking – asking for help was one of the scariest things I have done. The social worker made me feel totally at ease – nothing I said made her react badly, and not once did she accuse me of making things up. On the contrary she was putting in more help then I would have ever asked for – recognising not only the help I need with daily living, but putting in support to get me out which could potentially open my life back up to something half normal.
The next steps are to wait for the hours to be calculated and to have a financial assessment to see how much (if any) I need to pay towards my care. As I am not working it shouldn’t be extortionate, and to be honest it is likely to be totally worth it just to regain some of my normal life back again.
The transition will feel difficult – at no point could it feel comfortable to agree to help washing. It will be odd having someone to help with food and cleaning, and even stranger to have someone around to support me leaving the house. Minus the washing, these are tasks I performed when I was a personal assistant to a disabled woman, and I never thought I would be on the receiving end just 11 months after starting that job – especially not at the age of 28.
I hope I will adjust – but this is no longer a real choice. If I stay like this I may as well write off a future in exchange for a life full of day time tv and poor hygiene. I want a life. I want to get to a point where I can do normal things, study or work, and have the energy to engage with the outside world. If I need a little extra help along the way to achieve this, then so be it.