When it doesn’t get better…

– «How are you? »
– «Are things getting better? »

Oh, how I wish I could answer «very well, thank you, we are finally noticing some improvement ».

Sadly, no. Never, ever as long as my children have been sick have we had any improvement at all.  A few ups and downs, depending on the season being summer or winter, but never anything like an actual improvement.

Of course it helps to take it easy, do less, and restrain our lives.  Then the «improvement» is caused by reduced activity, and I don’t really consider this as getting better.  We are better at coping with the situation, we are not getting better.

We have never experienced that coping has ever turned the disease around in such a way that the children have been able to return to their normal lives.  It is horrible to realize that in our home, this disease has not been tamed in any way.

Not that we don’t joke and laugh and have a good time.  We are very good at this, considering the situation.  We are not depressed.  The challenge is that life is so unfair at times.

The worst part is when other people outside our close family don’t realize that we have very sick children who slowly and steadily keep getting worse.  It is like they refuse to accept reality and certainly don’t want this to affect themselves and their perfectly positive and happy way of life.

This lack of compassion often makes it difficult to have a meaningful conversation with people in the world around us.  With our family, friends, and our schools for that matter.  We feel isolated, misunderstood and not accepted.  Communication on-line with people in the same situation becomes hugely important to preserve our strength, identity and self esteem.

The health services are rarely good collaborators.   It seems like they prefer not to relate to this disease at all, they would rather mix it with all kinds of diffuse maladies of more or less psychosomatic character.  Such opinions are unfortunately contagious far outside of the health services’ own ranks.  Fortunately we do now and then get  reports from doctors who have really understood this terrible disease our children is up against.  Suddenly we hear facts that far better than before describe what we experience every day:

Actually, not very many people do recover from ME.  Children do not have very good prognoses either, even though we have been told so repeatedly.  Actually, it is so rare to have a spontaneous recovery that most of us have to live with this disease for the rest of our lives.

Many of us do experience a gradually improved level of functioning as a result of adapting to and coping with the disease but a gradual decrease is not uncommon.

These are scary facts, but for those of us who have lived with this disease close to us for years, this is not unexpected news, rather more like we expected.  This is depressing, but still far better that false hope.

Of course we all do hope that research and science in time will find a cure for ME, but right now it is more important to be understood and accepted.  It feels good to have something to present when we are met with disbelief and incomprehension.  Unfortunalely, I am afraid these attitudes will linger for a long time.

Here is David Bell’s Thirteen Year Follow-up of Children and Adolescents With Chronic Fatigue Syndrome, one of the reasons why this misconception of children and youth having better prognoses than adults became so widely spread.

By Frustrated ME-mom


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