Beachcombing's Bizarre History Blog

Dealing with Chronic Conditions August 16, 2014

It’s high summer and while everyone is away at the sea I thought that I would sneak out this essay: a non-history post on what is typically a history blog. Background: I suffer from a sometimes debilitating chronic condition that has been, to one degree or another, in my life for about twenty years. What have I learnt from the long wrestle with my own mortality? This is what I wish someone had told me when I first realised I was ill.

Other tips: drbeachcombing AT yahoo DOT com

1) Be Careful of Labels: Chronic conditions are necessarily labelled (HIV, Parkinsons…), but an illness plays out with characteristics unique to the patient. Treat your illness as your own personal possession with its own rules, rules which have to be learnt: many commonplaces of the label turned out, as it happened, to be right for me; but many important idiosyncratic characteristics emerged only through observation. Likewise when you are looking for help cast your net wide: look not only at your own condition but at other related conditions to see how people manage their symptoms.

2) Doctors On Tap Not On Top: Doctors should certainly be given a chance, but if they fail you, you should draw conclusions from their failure and ask yourself how much they are likely to help in the future. I went, over five years, to thirteen specialists all who misdiagnosed. You owe it to yourself to become (or to have your wife, parent, child become…) an expert in the field. It is irritating enough to have a distraction of this magnitude: don’t abdicate your fate to an overworked, frazzled specialist. Doctors are helpers not answers.

3) Share with Care: You define yourself. Some people take relish in becoming their illness: joining local societies, going on lupus fun runs etc etc Some people have no choice but to share: their illness is or has become serious enough that they are visibly marked. But if you are less clubbable or less ill think carefully about how you are going to talk  or not talk about your condition. Many in my circle of friends and family have no idea that I am ill and this has given me a freedom I’m often grateful for. Luckily they don’t read this blog either.

4) Use Windows of Grace: Many chronic conditions are diagnosed when the condition is annoying, but not deadly. If you are diagnosed in that phase then you have a precious, precious window, a period of months or years before you need to blitz said condition with heavy medication. My greatest regret is that in any early phase of diagnosis I was talked into taking a powerful medicine that damaged rather than helped me. I still had time to go after alternatives and I should have done so.

5) I’m On Fire: Often immune system and neurological conditions flick between periods of dormancy (when you deal with the damage) and periods of activity (when you suffer new damage). If your condition follows this pattern then the single most important lesson you can learn is how to dampen down your body when there are flare ups. I have over the years experimented with: acupuncture, anti-oxidants, aspirin, comic book reading, exercise, fasting, ginger, green tea, visualisation, yoga… and many, many more. Most were embarassing, some were humiliating, and some have meant years more of life expectancy. Experiment, experiment, experiment and put together a protocol.

6) Don’t Despise ‘Alternatives’: Medicines for chronic conditions often have awful side effects and (when you look at the statistics)  limited success. Medical science understands that alternatives, even if lacking any inherent ‘curative’ merit, may open the doors of the mind: the terms ‘placebo’ and ‘suggestability’ cover just this territory. Don’t be afraid then of searching out alternatives for yourself, remembering that the most effective: (i) must not seem silly to you (I cannot take homeopathy or toe massages seriously); (ii) they must feel ‘powerful’ when you experience them (if you fall in love with your shiatsuist that is almost certainly a good sign); and (iii) it would be best if they involve rituals (aka ceremonial magic).

7) Fear Will Take You to the Dark Side: There is nothing more dangerous and corrosive than fear: do not underestimate its power. Do whatever it takes to speak and spit out your concerns, finding if need be a mental health specialist to do so. Fear with these conditions almost always has to do with the future. Our all too human fate is to live these experiences twice, instead of one time or never. ‘The coward dies a thousand times before his death, the brave man but once.’

8) Metaphors Matter: If you talk about ‘eliminating’, ‘maiming’, ‘killing’, or ‘wiping out’ your illness you are taking a very hostile approach to what is ultimately your own body and a condition that you and your body have created together. It is much more productive to think of ‘helping your body to return to a natural balance’, or some such . This one is a bit ‘hippy’ and I would have snorted ten years ago, but now it makes sense, at least for me.

17 Aug 2014: Lots of individual tips for specific cures but in terms of generalities KMH sends in this that I would link in with (6)  KMH would add in a new section.”Those of a religious disposition may pray for themselves and/or have others pray for their healing. They may visit shrines like Lourdes or even seek out so-called faith healers if they are led to do so. They may also make a bargain with God or a saint – (if God heals me I will do such and such). Danny Thomas, the  famous comedian, did  this and afterwards put St. Jude’s Children’s Hospital on the map through his donations and fund raising.’