Living with a rare disease.

[philippacardale]

Hi, I am a freelance journalist and currently researching a piece about living with a rare disease.

I would be interested in any comments readers might like to make about their experience of having a rare disease. Anecdotes, problems in what most would consider everyday activities, eg mortgage or insurance applications, discussion with health care staff.

I also have Churg Strauss Syndrome. And for example I find it can be a very lonely experience.

I welcome your comments which I will use only after agreement with contributor and anonymously.

With thanks

Philippa

[Donnygirl]

To be honest I think you need to sit down with people and listen to stories. Comments can never relay what really goes on xx not disrespecting you in anyway I wish more people like yourself raise awareness like you said it's a very lonely place xxx

[Sabine-Andrea]

Hi, I have been living with lupus for over 15 years and diagnosed since 2004. I kept coming down with ailments so it was a relief to be diagnosed and I had a good consultant that signposted me to St Thomas hospital in London. From there I met and talked with others with lupus and gradually accepted the illness and diagnosis. I suffer from rashes joint pain fatigue and brain fog!! I have had infections and been very ill, having flashes every couple of months. When I moved to where I am now they virtually re diagnosed me and I was unemployed for 5 years which was a strain both financially and emotionally. Now I am settled in better health and working voluntary hoping to get back into work soon. I hope this has been of help.

[SLC03]

I think something most people struggle with is noone understands what they can't see... not only is it a strain in everyday life but a strain on relationships with friends and family too. I've lost many friends because they think I'm being too lazy to go out and see them when actually I'm staying at home to reserve the little energy I have and trying to limit the pain I put myself through just to get through that day and care for my young daughter. It's a constant balancing act between pain, fatigue and having a life!

[jamg3916]

The loneliness, loss of career, isolation, fear of becoming more ill, fear of the future, sadness that I can't play with my latest grandson or push his pushchair, anger at government and terrifying benefit system, anger at having to rely on others and loss of independence, frustration at own limitations.

[ac489 in reply to jamg3916]

Same feelings I have. My daughter is due to give births to twin boys in five weeks and I fear not being able to enjoy my first grand-babies because of the dreaded fatigue and pain.

[Jane2602]

I have SLE, Sjögren's , small fibre neuropathy and because of my invisible friends also depression. I read daily others plights on here nodding sagely along as in all posts I can identify with the comments and feel the despair . I still work full time in a challenging role and unless you are 'in on it' you wouldn't easily guess I was ill . I take pride in my appearance putting my make up on doing my hair dressing well as my disguise or armour to fight through the day. Answering the question ' how you feeling?' . 'Ok'or 'not bad'

I am more than my collection of illnesses but suffer for my determination to keep my life . The life I have worked so hard to create my lovely family and friends whom I cherish and want to be there for as I have always been, the kudos I have worked my butt off to earn at work , my life !! I am permanently exhausted, in pain , I work and sleep during the week and spend the weekend regrouping to fight through the coming week ; but am reluctant to give up my independence until I have no choice .

Living with invisible illnesses is so hard and I think that it's difficult for others to understand, after all seeing is believing ?!

[Freckle1000]

I've had SLE for 33 years and I cannot escape the conclusion that as a group we face discrimination from the medical community. I had one GP explain. ' we hate lupus patients because the disease is nebulous, unpredictable, creeps around the entire body & is not simple or black and white.

Add to this that we are mostly seen as hysterical females ( as opposed to being nessearily hypervigelent)

There is also the issue of some of us (me included) suffering from mild cognitive impairment and mild mental illness due the how medications and the disease itself effects the mind - its just a recipie for not being quite as worthy of attention from Doctors as someone who is ' normal '

The disease is too difficult and we are not really seen as 'as worthy of life' as someone who is still relatively healthy and functional.

I suffer from Post Traumatic Stress Disorder from a life time of repetitive diagnostic overshadowing. - eg. My last bout of illness at one stage reduced my kidney function to 20%. My justifiable 'high anxiety' due to not being listened to for more than a year when seeking help for this - (3 years if you count the early signs of the flare I was reporting) - was actually used as a pretext for the Doctors not helping me. ie. My anxiety was seen as so out of proportion that they considered this the actual and real problem. From my perspective I knew I was dying and was being left on the side of the road to do so. Not only was I trying to suppress anxiety in the hope of getting treatment, I was also trying to surpess a life time of real hatred for Doctors.

At the time I was so traumatised by this all too familiar dynamic that I could only speak in a stilted manner - but I did tell them my symptoms very clearly and they were aware of my SLE status with a history of serious renal involvement. ( along with numerous other SLE internal organ involvement )

This dynamic has plauged me my entire life. If it was just a one off - I would not be writing this.

The discrimination against us is real.

[Justamom]

My greatest frustration is the invisible illness and the discrimination that goes along with it. I feel miserable almost 24/7 and worry how I will affect my family if I show too many symptoms. I work part time for my husband and even he does not understand that getting dressed in the morning to get to the office actually HURTS. It is utter exhaustion like I could have never imagined! It is so very difficult to function and to express to Drs who have never experienced this disease what I feel like. To make it worse, my 19yo daughter was diagnosed with pancreatitis for 2 years at 14 and Lupus a couple of years ago. It seems it was lupus attacking her the whole time, but she lost all friends and was bullied mercilessly and still is because she looks good! She drags through life trying to be "normal" and go to school between bouts of flares and hospitalizations. My greatest fear is how she will finish college and do her clinicals 3-12 hour days to become a nurse. We do lots of praying and try not to complain unless its to each other. "Friends" dont get it, Doctors dont get it, spouses dont get it. You can only get it if youve lived it. I feel like it should be easier to be disabled when needed to recover and get on with life but we cant "act" disabled and thus fighting through sometimes only proves to make us ultimately worse. Thanks for bringing attention to a terrible disease!

[Purpletop]

For me it is the constant fear. Fear of how the disease will progress and of how it will cause complications. Fear of being maimed by the drugs I take. Fear of becoming incontinent, demented, paralysed.

And then it is the disappointment with the medical profession. Disappointment at their blinkered view that focuses only on test results, despite it being clear that no test is foolproof. At their inertia and lack of interest in their subject. At their eagerness to address what they know, not what you ask them.

To give you an example: the other day I had a weird episode while shopping. Weird in the sense that it hit me suddenly and then made me feel really ill. I went to A&E. They did an ECG that was abnormal. They admitted me in cardiology over night, did tests to check troponin levels to see if it had been a heart attack. It hadn't. the ECG was borderline pericarditis, so once the tests came back clear for heart attack, that was that, clear diagnosis of pericarditis as far as they were concerned.

I told them that I've been having these episodes before, though not as severe. I told them of the heart-attack-like symptoms, not fitting with the pericarditis. I told them of the sudden drops in BP that I've been experiencing lately. Did they listen? No. They felt their work was done, a diagnosis was reached, time to discharge. My question was what caused the episodes. Their answer was you now have pericarditis. These are not necessarily related.

I'm now going to see a private cardiologist. He will do all the possible tests again, as he did 6 months ago when I first started having these episodes. The result will again be normal. I will again ask about vasospasm or arterial spasm or autonomic dysfunction or whatever else I've managed to read online that could explain it. He will again look at me as if I'm mad and spend too much time online. I wish I didn't have to. I wish I wasn't reading about all this horrifying things that could go wrong with the human body. I wish I could still have the naive conviction that doctors know everything and if they don't know, they'll find a way to help.

And this is the worst thing about having a rare disease. The loss of HOPE. No one to help us, no one to understand us, no one who even listens to us. How can we fight this illness on our own?

We live our lives in hope. Once that's extinguished, how can we go on?

[ac489 in reply to Purpletop]

I agree completely with your feeling. Hopelessness, frustration, loss of hope, loss of trust in doctors and people around who don't understand but assume you are exaggerating it all. Loneliness and depression, angry, etc, etc,

[Hidden]

I think for me it's the self stigma that is the enemy because it prevents me from trusting my instincts and means that I agree too readily with friends who say "glad you're over it - best focus on work and other stuff and not think about your health". This is what a friend said to me only last night and I nodded my agreement because I don't want to lose my friends and end up classed as a health bore.

So I overcompensate by dismissing my previous periods of ill health and talking about work, trying to be fun, insightful about the problems of others etc. Consequently I get home and am in so much pain and am so overtired that I can't function properly for days, even weeks.

This in turn reduces my confidence in my symptoms because I will find umpteen other reasons for why I am totally wiped out and in pain than my UCTD/ RA - or whatever I'm finally rediagnosed with.

So then I get properly ill and become angry with the medical professionals,with my friends and most of all with myself for not having trusted my instincts to start with and I go into a dark hole and write angry letters and make angry notes to my doctors or myself - most of which never see the light of day thankfully.

So it's the perpetual psychological see saw of self doubt and refusal to pace or live with and accept having a rare multi symptom/ system autoimmune disease that I most deplore. The best tonic is being able to come here and share these feelings and give and receive support.