Aberdeen Royal Infirmary with the neurologist Dr Coleman was the scene for my initial diagnosis in 1994. If you have just been diagnosed with multiple sclerosis, chances are that you are looking for answers.
Being diagnosed with any chronic illness is a traumatic event. For the purposes of this post, I will be referring to MS, or Multiple Sclerosis, as that is the condition that I suffer from. Many of the psychological issues will be the same for a diagnosis of any autoimmune disease.
New or Recent diagnosis with Multiple Sclerosis or Fibromyalgia
This can be very upsetting, especially as you have no experience with the disease. You don’t know anybody with MS, it does not affect other family members OR you have never heard of Multiple Sclerosis.
Where do you turn? Who can you speak to?
Your world has been turned upside down and you don’t know what this diagnosis may mean.
You have so many questions:
- Will I still be able to work?
- Can I look after my children?
- What will I do for money?
- Is there support available?
Rather than try to answer these specific questions, it might be better to outline what MS was for me and how it has affected me. You will be different, we are all different, which is why specialists have such a hard time giving you specific details.
I began this post with reference to the Aberdeen Royal Infirmary. This was the hospital where I received my MRI scan and lumbar puncture. These tests pointed to it being MS.
But as I had experienced only one mild flare, at that time, it was insufficient for a formal diagnosis. I believe that now, the MRI would be sufficient on its own to make the diagnosis.
At that time, I was working full time. That was why I was in Aberdeen. I lived in Fife and was commuting to Aberdeen weekly for work. I was driving, I had a company car and travelled all around Scotland to visit customers.
The Initial Period of Denial
My diagnosis had not been a surprise to me. My mother had been given a diagnosis of MS many years earlier and I knew that heredity was a possibility. However, that did not stop me from accepting the obvious, I was in denial.
I convinced myself that it was nothing more serious than a trapped nerve. Numerous visits to the holistic chiropractor on many occasions, wasted a great deal of money, to have him suspend his magic pendulum over me to allow him to massage my neck and charge a fortune for the privilege.
I think I managed to persist with this negative denial approach for a couple of years, until my next relapse.
Accepting the inevitable
There comes a point where you can fool yourself no longer! The symptoms appear with greater regularity and with more intensity. Denial no longer, it never did, serves any purpose.
You need to begin a period of acceptance and planning. Your illness, this disease; it is real and you are going to need to make adjustments to your life.
But, what can you do? I would suggest that you don’t do what I did, which was to ignore it. Yes, my symptoms were fairly mild and infrequent to begin with but, sadly that was not to be the status quo.
Multiple Sclerosis is known as a progressive disease for a reason; it will worsen unless you take action.
There are things you can do. There are support groups and facilities out there. So, if you have been given a diagnosis of multiple sclerosis (MS), or Fibromyalgia seek advice. In the early days you will, most likely, feel fine and not feel the need to do anything about it. Take it from someone who has been there; you DO!
Making a plan of action
There is a LOT of information out there. You need to start evaluating it.
- Speak to your GP
- They are a general practitioner but will have many MS patients
- They will be able to put you in touch with many of the other support services
- Make an appointment with your neurologist
- He/she will understand your illness far better than your GP
- My neurologist referred me to a urologist and to a psychologist and both helped
- Contact your local MS Society
- Find a local rehabilitation centre
- They are better placed to offer services designed to your personal needs
- I saw a physiotherapist to help with my walking and vertigo
- Dust off your library card
- You have a lot of reading to do and borrowing from the library is far cheaper than buying a load of books you may only read once.
- Browse the Internet
- There is a vast quantity of information on the Internet
- You can meet some very valuable friends on social media
There will be so much you need to learn and understand. I wasted the first five or ten years by doing nothing and waiting until my symptoms became so bad that the research and learning became very difficult to accomplish.
How do YOU handle this traumatic diagnosis?
As with any autoimmune disease, like Multiple Sclerosis or Fibromyalgia, everyone will be different. How you react to it will also be a personal journey.
I think it is perfectly normal, and probably fully expected, that we go through an initial period of denial after the diagnosis. Multiple Sclerosis is a serious condition. You may not think it is bad or you may think you have just been handed a death-sentence. The truth is somewhere in between.
In the early days, you may, like I did, experience only mild symptoms. Don’t be fooled, MS gets nasty, so learn how to deal with it. Accept advice and take it on board, you may appreciate it in the long term.
I know I didn’t and now regret it every day. You are always told to “Listen to your mother”, I didn’t but I should have done. She recognised very early, the need to manage her multiple sclerosis with diet. A fact which has done her well and would have done me well if I had listened.
I am acutely aware that I am not providing any real answers. There is a reason for this and that is due to the very personal nature of multiple sclerosis. It is different for everybody, so there is no one-size-fits-all solution. You need to come up with your own action plan.
I cannot provide you with your personal solution, but I hope I can point you in the right general direction. The fact that you are reading this article would suggest that you are already taking the necessary proactive steps to manage your chronic illness.
Your GP should be your first point of reference. GPs are, by their very nature, not specialists but if they cannot provide you with answers they will refer you to the appropriate specialist who can.
Secondly, and I am certain of this, you should look closely at your diet. “You are what you eat” has never been more true. If you don’t already, start eating more fresh fruit and green vegetables, more fish and less read meat. If not for the sake of your chronic illness, it is a good life-style choice anyway.
Finally, don’t assume that every symptom you experience is down to your chronic illness. I suffered chronic pain for years, which I put down to multiple sclerosis only to find out it was an enlarged prostate gland that I now receive medication for.