Nobody’s Children

Many years ago when my husband was in the army and he was yet to be my husband and still only my live in boyfriend, he was instructed to move camp. As part of moving camp they would pay for a moving company to come in, pack up HIS house and move HIM to Dorset. They would move up to one large lorry.

On discovering however that he lived with someone and was unmarried, they refused to move US. This was despite our combined flat contents being significantly under the capacity they were prepared to move for HIM alone.

He spent many hours trawling through the army regulations and discovered that as long as our contents was not over his individual capacity (rather than married couple capacity) then they had to move us! I remember at the time we thought how if you didn’t have the education, the time or confidence to investigate then you would have to pay for the move yourself. We discussed how the system had the power to make an individual’s life excessively difficult.

I always find this upsetting when society limits somebody’s abilities purely because ‘it’s the system!’ I felt this way again yesterday. I consider myself incredibly strong willed, confident and able to defend myself. I cried yesterday however because I felt so abandoned by the NHS system.

Having waited 3 months to see an ‘M.E. consultant’ (notice the inverted commas – he was an Infectious Disease specialist), I finally went to see him yesterday. I wasn’t expecting miracles, just guidance and support. I wanted to make sure that what I was doing was the right thing and guidance on where to go from here. I wanted him to perhaps suggest, based on the severity or not of my symptoms, what my possibly timeline was.

I walked away from the appointment in floods of tears, barely able to stand due to sheer exhaustion and stress. I have never felt this way before and I am strong.

I won’t go into too many details (check out any M.E. forum if you want to know how horrible these appointments can be!). Suffice to say he never asked me about my symptoms, I had to shove them in his face, pointing out my symptoms record (this appeared to be highly bemusing to him).

He seemed to focus on my stress levels (clearly thinking I was depressed or such like!). He informed me I should have gone back to work earlier although I had been trying to tell him some days I could barely get out of bed, I couldn’t drive and I found ‘easy’ socialising for more than a half hour exhausting.

I walked away with no idea whether my system of pacing was any good, no idea how to build up my activity level, no idea how to deal with my pain levels. When I requested this information he spoke in generalities. Speaking to my husband afterwards, we both felt that he didn’t know the answers and was trying to get rid of me.

What upset me most afterwards was what I felt was his total rejection of my right to treatment and support. I pay his salary through my taxes so theoretically he works for me. I have the right to go to an appointment and be treated with respect.

Imagine though that you were not me. Imagine that you had to travel there on your own by public transport for an hour because you had no one to bring you. Imagine you didn’t have the self-confidence to say to yourself, ‘he’s an idiot, you are ill and you need to ignore what he says.’ Imagine if you as a result of your meeting assume that you’re not as bad as you thought so you return to work (driving) and ‘get on with your life as normally as possible’. The consequences of not standing up for yourself have the potential to do serious damage to you not only physically but emotionally.

The lack of specialist M.E. centres in the UK and the lack of a _ist specialism for M.E. means that patients see Infectious Disease specialists, Rheumatologists and Neurologists. There are many of these specialists out there who are great, on the other hand if you read the forums many of them lack the specific knowledge to provide sufficient support.

The lack of empirical evidence of the illness through run of the mill blood tests seem to result in some doctors not knowing what to do. This leaves patients alone, trying to work out how to deal with things themselves without qualified support. Somebody called M.E. patients ‘nobody’s children’. Nobody wants us and nobody can support us.

I have made an appointment with my GP and I will be requesting a referral to one of the M.E. services recommended by other M.E. patients. Would I have done this if I wasn’t able to have such a ‘screw you’ attitude? Is this an example of society favouring the emotionally and indeed financially strong (none of these clinics are local and may even require a hotel stay)? I think so and it upsets me.

I’m in a good situation where I am likely to recover as my support network is so strong. Those without this network daily have to go beyond the energy thresholds just to survive. These are the people who need the support of professionals most and these are the people who may not be able to add a fight for decent service to their energy expenditure. This upsets me.

Update: I have spoken to my GP. She thought my treatment was bad as well. She is going to refer me to a pain clinic and is going to try and refer me to an M.E. Clinic of my choice. Somebody in the NHS is good!

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8 thoughts on “Nobody’s Children”

  1. Karen, I can SO relate to what you are saying. The sense of injustice is yet one more burden to carry. I have worked and paid taxes for almost 40 years before I finally had to finish work as my ME got worse. I feel that the NHS I have helped to pay for just doesn’t exist for me. Like you, I am lucky in many respects. I have a very supportive husband and I am capable enough to inform myself and defend my opinions. And like you, it makes me so upset to imagine how people without that kind of support have to deal with the ignorance and lack of respect from the medical profession when they are desperate for help.

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  2. I too can sooo relate, Karen. I saw an infectious diseases specialist and the only good thing was he then referred me to the ME services. However once there I was given 8 sessions of CBT. I admit this did help – to a point! But once the year was up I was basically told “you know what you’re doing, get on with it and I am now left with no NHS support at all as my GP is worse than useless. It is so hard as before this I always believed that doctors would help.

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  3. Coping with and managing this life-altering, life-stealing disease–if that is what CBT is used for–can be helpful to a point in that way. However, in no way is CBT any sort of cure.

    ME/CFS is a complex physical disease needing specific medical intervention–and just what is that?? Dedicated ME/CFS Experts and Researchers are now working on this harder than ever. Hopefully, we will soon have those answers!!

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  4. This blog is so touching it makes it hard to realise that is no fantasy story, it is cord hard reality. I have read so many tragic books, I can put myself in the shoes of those charecters even with my imagination, it still just takes one knock to bring me back to cold hard reality.

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