M.E. Families

 
 
 

The author of this article wishes to remain anonymous to protect the identity of her family. The opinions expressed here are those of the author and do not necessarily reflect the views of M.E. Support. Do you have multiple cases of M.E. in your own family? Have you read an interesting article or research paper on this subject? Please Contact Me confidentially or share your views on the M.E. Support Facebook Page.
 

I have heard anecdotal evidence that M.E. can run in families, and from personal experience it certainly seems to be the case. Having met other sufferers, I have been surprised to find that they also have a close family member with M.E.

Maybe the current gene research will throw some light onto the subject? Professor Tony Pinching et al. have discussed this topic in the Action for M.E. InterAction magazine. There is an interesting article going into more detail, including facts and figures, on ME Research UK, which also includes a study involving twins. Dr. Charles Shepherd mentions some research in his book ‘Living with M.E.: The Chronic, Post-viral Fatigue Syndrome’(Vermilion 1999, ISBN 0-09-181679-3). The book ‘Shattered Life with M.E.’ by Lynn Mitchell (Thorsons 2003, ISBN 0-09-181679-3) covers a number of aspects regarding families coping with M.E., relationship issues etc.

Research has advanced somewhat with regard to M.E. running in families, but although the physiological aspects are beginning to be uncovered, I can find very little about the emotional aspects of two members of a family suffering from the disease.  In my experience the simple fact the disease can affect a parent and a child appears generally ‘suspicious’ and seems to add ‘fuel’ to the disbelief we all seem to encounter from time to time.

In our case, we all caught Upper Respiratory Tract infections at the same time, including our cat. My husband was not so badly affected and made a swift recovery. He suffers from Psoriasis, an auto-immune disorder; patients with this are less susceptible to viral infections. Our 14-year-old daughter and I continued to deteriorate. Our cat didn’t recover at all and sadly died. My daughter’s symptoms presented differently to my own (this is not uncommon) and whilst her doctor diagnosed M.E., I was initially diagnosed with Arthritis; it was some years later that I was rediagnosed with M.E.

It was an incredibly difficult time. I watched my previously fit and healthy daughter (who had won an attendance prize for never missing a day from school) rapidly deteriorate until she was virtually bedridden for two years. In hindsight I wonder how we muddled through!! My daughter lost her friends as she was too ill to remain in contact with them, but tells me that her computer and internet connection was her lifeline. As a consequence we became very close, as, except for when her father came home from work late in the evenings, I was her only source of interaction. From a mother’s point of view, I found it very difficult to watch helplessly as my daughter’s quality of life became less and less. We managed to get through each day by willpower and determination only. Because I was ill too, I used my energy to look after her and take care of our basic needs; housework was reduced to a bare minimum, thereby saving the energy for cooking meals and washing the laundry.

From my own point of view, I found it very difficult to cope: I was dealing with the emotional issues of watching my daughter suffer, trying to run the household as best I could, plus my own issues of having to leave my job and deal with my own symptoms. Nobody informed me of the possibility of help with caring, or of any financial assistance, or education at home for my daughter. I can only say that it was a very dark period in both our lives. How I wish I had discovered Dr. Anne MacIntyre’s book ‘M.E. Chronic Fatigue Syndrome: A Practical Guide’ (Thorsons 1998, ISBN 0-7225-3539-2) at the time; it’s packed with lots of information covering a wide range of issues related to M.E.

In the main, my husband was mostly unaffected by the situation at home and didn’t really understand what we were going through. This in turn resulted in relationship problems, already burdened by the financial situation of the loss of my wages.

As our health began to improve, my daughter and I found that we could work together. We were able to understand each other, kindred spirits, each knowing when the other was tired and needed complete rest. We could understand each other when brain fog hit and speech was virtually unintelligible. We could pace together and plan visits to hospital and incorporate fun and relaxation time. We could chuckle at some of the text messages we sent each other when the brain fog was at its height and had a mutual bond of acceptance.

I have learnt from experience, many of us ‘think’ we are alone in our experiences, but this is not necessarily the case in many instances. Sharing our own experiences, e.g. via M.E. Support, can provide a ‘comfort’ to others, knowing that they are not ‘alone’ in their experiences or symptoms which are in fact not dissimilar. So although I’m hesitant to publicise my own ‘family’ relationships (because being ostracised hurts deeply, and I wouldn’t want to ‘prod’ other people’s emotional scars, not be able to do anything about it, and not be able to supply a ‘happy ending’) I would hope it brings some comfort to people in a similar position to know they are not ‘alone’.

My side of the family are all long dead and our daughter was too young to remember them before they died.  I have never been accepted by my husband’s multitudinous family. This is our second marriage, both of us have been previously divorced, and my in-laws took the side of my husband’s ex-wife and didn’t speak to my husband for many years. Therefore, our daughter spent her childhood not knowing her only living grandparents. However, pre-M.E. it didn’t seem to be such an issue as school friends filled the gap. Although our daughter had a good relationship with her stepbrother and sister, they have long since drifted away during the time both our daughter and I were very ill. The disease has meant our daughter has never had the opportunity to properly meet, let alone build any kind of relationship with, her aunt, uncle or cousins, and has only relatively recently got to know her grandparents, having only met them a handful of times over the years.

M.E. gives us all a ‘glass ceiling’ and if we venture beyond we will pay the price. In our case, it has also given us ‘glass walls’ – we both remember our pre-M.E. lives and sadly know we have wider family, but can only look in from outside. I’m sure you know or are aware of how lonely and isolating the disease is, not only by its nature but also by the effect it has on trying to maintain friendships, and what an enormous effect a supportive extended family could have with very little effort on their part. Just a note or a phone call, even taking time to ‘be with’ us in the same room for ten minutes or so.

To be frank, I continue to find it extremely difficult to come to terms with the situation regarding extended family, not so much for myself but for our daughter and granddaughter. I am reminded of how many disabled people were shut away in institutions in years gone by, ignored and forgotten about. Although our daughter now has a daughter of her own and also has some loyal friends, the extended family could have helped her so much more, particularly when she was younger, just by including her in a way that made her feel there were other people in the world who cared about her – even if she wasn’t well enough to see them, a card would have been deeply appreciated.  Instead she has been shown that, on a conscious or unconscious level, other family members do not appear to care, as is evident by their absence, and as much as my husband and I told her and continue to tell her how much she is loved and valued by both of us, knowing several people cared about her may well have saved her from the awful depression that many of us have to deal with as a reaction to our physical problems isolating us; this seems to affect young people even more deeply.

Two years in a darkened room, unable to go to school or see friends, being assailed by awful symptoms, with only me for company, yet aware of such a large extended family who made no effort to contact her, hurts me on our daughter’s behalf as deeply as it must have hurt our daughter at the time. In time, our daughter gradually became well enough to leave home and start work.  Whilst I continued on the slippery slope of relapse.

‘What about Social Services?’ is basically what my husband’s parents said when telling him to do about my daughter and me. Things gradually fell apart between my husband and me; basically he was choosing to travel abroad during the time I had a major relapse – and, true to his parents’ style, he obeyed and I found myself frightened and scared with a myriad of symptoms, confined to bed and in the hands of Social Services.  The Rapid Response Team were wonderful, although I confess I felt humiliated and degraded – I was not ‘alone’, I had a family, but the family didn’t care enough – hence the humiliation etc. Calling Social Services never entered my own side of the family’s heads years ago; we loved each other and so we looked after each other because we WANTED to.

Our daughter has suffered several serious relapses in recent years. Going back to work part time after the birth of her baby proved too much for her, and she was dismissed due to absence with health issues. Our granddaughter’s arrival was an unexpected surprise, but once more, in the midst of an extended family, our tiny family has been left to struggle along on its own. Maybe this highlights my own bitterness and the fact that I should have walked away and taken our daughter with me?  But there again, neither my daughter nor I were well enough to even crawl away. Would it have helped other people to notice what may be happening in their own lives? I know disbelief haunts most of us and how hard it is to actually get our nearest and dearest to read up, study M.E., understand us and ultimately accept us.  As someone once said to me, ‘you can be more lonely in a crowd than by yourself’. In hindsight, I guess it’s VERY important to find out how your life partner (if you have one) really thinks about important life events, bearing in mind that a life-changing event can happen to any of us at any time, and also where the partner’s loyalty REALLY lies – or find ourselves a good Social Worker. It was my understanding that Social Services step in when a person needing help finds himself or herself completely alone and without family, rather than a ‘card to be played’ by some people in order to abdicate responsibility.

My own husband has changed dramatically since he became my official carer. Oh how I hate that word ‘carer’, it sounds like a business transaction, rather than loving attention between two people!! He is kind, helpful, does all the cooking and takes my daughter and me to appointments and our granddaughter to childminders.  Although how we would manage without the benefits system continues to haunt the back of my mind in case the financial support crumbles under the cuts. Are there other people out there likely to be in a similar position, ostracised through circumstances?  It would be more useful if I could think of a way out of it. I know we can’t deal with the physical stress it places on our adrenals/hypothalamus/cortisol; I guess the partner concerned is the pivot, and I guess I was wrong to allow it to go on for so many years. It’s not as though it’s just one or two of the extended family, it’s the entire extended family.

I guess I’ve answered my own question, that a particular type of person will never change. Maybe it’s best to check out the partner’s loyalty stance, and if the partner chooses to believe the extended family, then we should run in the opposite direction (in our case crawl) or spend a lifetime being on the outside, looking in and allowing our children (if we have them) to be isolated and left out too, along with the future generations. Which brings us back to the circular path – do we really want our children to feel lonelier with a family out of reach physically and emotionally, or to grow up alone whilst the disease creeps ever onward until the children become well enough (hopefully)  to find loyal friends? I used to think ‘Love Conquers All’, but I’m inclined to re-frame the saying to ‘Loyalty Conquers All’.

Even if one’s partner changes, the extended family won’t.  Is our physical reaction to the hurt and stress (adrenalin, cortisol etc.) REALLY worth it? If the answer is ‘yes’ then take into account the long term effect on your own little family; if still ‘yes’, then at least prepare yourself for conflicts of loyalty. Mindfulness meditation can help relieve emotional distress, as can auto hypnosis, and a companion animal can go a long way towards relieving loneliness. And to all ‘lonely in a crowd’ people out there, you are NOT alone and fellow sufferers really DO understand.

The ‘anecdotal evidence’ carries on growing, and I have received contact from several M.E. parents whose son or daughter has developed the illness. Most experts believe M.E. sufferers have a genetic predisposition which means we have certain genes which increase the risk of developing the condition; however, thankfully they do not make it a foregone conclusion. Thank goodness for the hard work of researchers, who, although they have not found a cure, are at least substantiating the physical effects of this devastating illness. I recently discovered that my great grandmother’s death certificate (the cause of her death had always been shrouded in mystery) shows that she died from Physical Exhaustion at 32 years of age, although she was affluent enough to have maids! I suppose I will never know for sure, but could it be?

 

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