The Reason I Speak Out

Recently I have had a few people telling me that I am ‘strong’ for talking openly about this. ‘Brave’ to publicise my illness, and that this sort of thing takes guts.

In all honesty, I do not feel any of these. Strength, bravery and guts come from being left with no other option. If I do not talk about my invisible illnesses, how on earth can I expect those around me to understand that I am ill? I have spent years getting angry, upset and frustrated with being continually labeled as lazy, but in reality what is there to go on?

I am young, I look fit, and I look healthy. I make the effort to go out, and on the days that I know I can’t bear the pain or exhaustion I hide away so that nobody has to deal with it. To the outside world I am not obviously disabled – I am normal.

The fall out from this continual cycle of putting on a mask for the world is that you begin to feel low. I have struggled with depression for over 11 years, medication has been a life saver, but it can’t do it all. In reality as much as I do need that medication, I also have to change to survive.

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Recently my mood dipped again – its a deep dark world inside the head of a person with chronic pain and chronic health conditions. Who wouldn’t get depressed if life day in and day out was painful, unpredictable and lonely? Who wouldn’t get depressed when being forced onto a different path from the one you have worked so hard to be on? Depression is a very reasonable response to chronic health conditions, both physical and mental illnesses.

Although I am low, I have also been in this cycle enough to know that I will bob up again, even when it doesn’t feel like it. I put things in place to keep me safe, and I force myself to engage in the outside world. Sure, staying in bed in a numb state or crying for hours on end are the things that I want to do, but I also know it does nothing to help me climb back into the light. This particular time I have gone so far to remove any spare medication from the house. That was a massive decision to make, but I know it was the right one. I felt extremely anxious without them (oddly they are like a safety blanket to me – both for pain and depression), but with the temptation out of the way it has given me some breathing space from the darker thoughts that I was having.

I also had to find something to motivate myself. It used to be dance that I ran too when I was depressed. It was the most amazingly wonderful hobby in terms of my mental health. Any anger or sadness got ploughed strait into a class, and as my whole attention was focused on how to get better, it gave me some wonderful time out, no matter how rough things were. Unfortunately I am far from able to balance on one leg, let alone be jumping around a dance floor now, and when I started getting low, I was also hit with just how much I have lost.

I knew I had to find yet another coping mechanism, and thankfully I have found and joined up to what is effectively a community pottery studio. I have a code for the door, and can go any time. The place is filled with absolutely lovely people, and everybody has welcomed me. The clay work is therapeutic, but what is most amazing is the sense of belonging that I never usually have. They take me as I am, and I don’t hide myself away – I can spend my time chatting and creating and bonding to people – this is the gem that will pull me out of myself and back into the real world once more.

Depression for me is always followed by change because I literally couldn’t stay alive if I carried on as I was. It is not something that I will be ashamed of, and it is not something that I hide – it forces me to keep pushing myself upward when everything else is pulling me down.

This is not a choice though. Talking about this is no longer just an option. If I want to beat this depression, to cope with the pain and build a life with my illness then I absolutely have to explain the invisible to those around me.
It isn’t strength – it’s necessity.

Assessment with Social Services

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.