There are many conditions where a diagnosis does not just solve problems; it can also add a whole new set. Multiple Sclerosis is the one I’m thinking about here.
Neurological symptoms can be vague, confusing; they come and go; it is easy to put them down to ‘stress’. It is also easy to imagine they are caused by a brain tumour. Or multiple sclerosis (MS).
Deciding whether to go to the doctor and begin what might be a complex process of diagnosis is not straight-forward.
The symptoms may be caused by something quite benign.
Why waste time going to the doctor? But getting a diagnosis in this case might be a great relief.
The symptoms may be caused by something less benign.
If it is a tumour, it needs to be treated straight away.
If it is MS, considerations about treatment are more complex.
Knowing what you are dealing with can help.
There are things to do which might affect symptoms. Such as:
working out whether heat affects you, in which case an icepack might sometimes help
getting personalised physiotherapy from a neurologically-trained physiotherapist and beginning a regular guided exerceise programme
seeking advice on diet and eating habits
getting regular rest, taking power naps.
You would not be afraid that:
you were going mad, were stupid, a ‘lightweight’, pathetic. People who have the symptoms without any idea of the diagnosis can accuse themselves of all kinds of things. They also often hope it is ‘all in the mind’; which might be preferred to being ‘all in the brain’ or ‘all in the body’.
Knowing what you are dealing with would mean you could no longer pretend, to yourself and others, that there was nothing seriously wrong.
With MS it is impossible to know how serious and life-threatening it is going to be.
It might be a minor inconvenience for forty years or more, or it may bring dramatic disability in the next ten to fifteen years. For most people it is something in between, but accurately predicting how it will affect any one person seems impossible.
Investigation and diagnosis could affect those insurance questions which ask: ‘Have you ever been investigated for…?’
Travel insurance and life insurance might become more expensive. Health insurance generally only pays for diagnosis, not for treatment of any symptom of more than one year’s duration, so people with MS often find themselves very angry when their claims are refused by a Health Insurance company which has taken large amounts of their money over many years.
You would have to tell your partner, family, friends, children, at some point, in some way.
You don’t actually know how they would respond, though you may assume you do. Some people keep it hidden, but this changes the relationship. People tend to know something is wrong and don’t like it when their friends/partners/family members lie to them, even if by omission. MS changes relationships, but it does not have to destroy mutual trust and love.
Children, but adults too, can make things up when they know something is wrong but don’t know what. Their secret fears may be much worse than the reality.
Relationships are affected by symptoms as well as by diagnosis, though differently.
People do look at you differently if you have a diagnosis of MS. It can be difficult to come to terms with this, but not impossible.
You’d have to tell employers.
Perhaps. Current employers may make provision and know how much they value you as a worker.
With potential future employers there is real uncertainty. The diagnosis might affect a job offer, even if your actual sickness record makes it clear that you have not lost more days than most people.
Symptoms without a diagnosis may also affect the capacity to do a job: knowing the diagnosis may provide a helpful explanation and increase the employers’ tolerance.
Many people with MS have no more days off sick than anyone else: they may also be more aware of the need to hold onto a job than others.
The pattern of previous symptoms is the best guess for future ones, though this is only an approximation. Telling employers this can make a difference.
There might be medication which helps.
Deciding which of many medications, which may or may not be effective, which do not cure and may have unpleasant side effects, is a complex, arduous and time-consuming process. Drug companies notoriously leave out trials with negative outcomes, which makes rational decision-making very difficult. Neurologists and other professionals may be biassed, either through their links with manufacturers or out of a desperation to ‘offer something’, when nothing might actually be better. Who to trust?
Research into MS is ongoing and producing new suggestions frequently.
Having a diagnosis may enable you to enrol on trials for future drugs – which may be life-saving, or, on the other hand, life-threatening.
You’d have to face the implications for your future and that of people you love.
But avoiding this might seem a betrayal. If they wanted to abandon you, you’d have to deal with this. If they wanted to stay, you’d have to deal with this too. People sometimes feel they have to choose between being a hero and a swine. It can be hard to share uncertainties and anxieties with someone you love and do not want to either lose or hurt.
The people you love are already affected. They cannot simply pretend their relationship with you never happened. Whatever happens, your diagnosis (even more than your symptoms) will confront them with new thoughts, new anxieties, new acknowledgement of aspects of themselves which they did not know before, just as it will you. Illness makes people feel bad; this is unavoidable, whatever you do. You may, however, be able to salvage love, affection and concern for each other, and face the future together.
You may prefer to pretend nothing is wrong.