The profile of the month is chosen by the MSIF editor. The February Profile is Sue Tilley.

Susan Tilley

Date of Birth: 14.10.53
Year of Diagnosis: 1978
Occupation: Accountant
Country of Residence: England
Type of MS: Who knows? But relapsing/remitting initially



I can clearly remember the very first MS symptoms that I had – I was 21 at the time and newly married. I often walked to my place of work to try and save money, as we always seemed to be penniless in those days! This particular morning I had woken up and my feet felt as if they had “gone to sleep”. I walked in to work and complained about this odd sensation when I arrived. My boss immediately told me that it was because I was wearing ridiculously silly platform shoes at the time (well it was 1974!).

The next day, this sensation of walking on cotton wool had spread to my knees. My boss made a throwaway remark at the time about his nephew, who was in a wheelchair with MS, and how similar it was to his symptoms. I did not take any notice of this at all, but it was the beginning of regular trips to my GP – in this first instance I think I was told that it was a neurological condition and that it would clear up in time – which it did.

The next time my arms were affected – I did not connect this problem with my legs and was told it was a trapped nerve. Next were my eyes – I did get sent to the hospital this time and MS was diagnosed, but only to my GP – not to me! A series of problems with my arms, legs, and eyes followed, not forgetting the constant cystitis that I thought I had because I always wanted to empty my bladder. I never connected all the different problems, but I did begin to get more and more concerned that nothing was being done – it made me feel that my doctors did not believe me. I tried every GP in the practise to see if any of them would give me some pills for this condition. I just wanted to come away with a bottle of something that would make the symptoms disappear. I had even tried a private physiotherapist at one point and naturally the symptoms disappeared after a while so I assumed a trapped nerve was the correct diagnosis.

The turning point came when my arms and hands were badly affected and I was trying to sew a button on to my husband’s shirt – he knew it was a job that I hated and I told him that I could not feel the needle. The look he gave me told me that even he did not believe my mysterious symptoms.

My GPs had always put my problems down to “nerves” - this was the expression used for people that were depressed. This certainly did not seem to be me as I was a very happy go lucky person. This only left one option……..it must be a brain tumour that was making me imagine all of these symptoms. There was only one thing for it – I had to see a psychiatrist – after all, I must be really loopy to be imagining all of these symptoms!

After ruling out lead poisoning the psychiatrist advised me to see a neurologist as soon as possible. I went to my GP, even taking my husband with me as back up for this request. In those days I was very much in awe of doctors! Oddly enough my GP thought it was an excellent idea and within 2 days I had my appointment. When the neurologist told me that I had MS rather than a brain tumour I was so relieved, but then I recalled my cousin also had MS and she was in a wheelchair. As I was having great difficulty walking at the time I thought life as I knew it was over, particularly when I was informed that I needed at least a week in hospital for further treatment and tests.

Fast-forward 25 years………..My life as I knew it certainly did end….

Suddenly things I wanted to do took on more importance, as I needed to do them before I was in a wheelchair. My cousin died within a year of my diagnosis and both my parents and I were convinced that this would also happen to me. If I was not going to live very long then everything needed to be done with some urgency (friends today would laugh at that, as I am renowned for being late!)

I ditched my house-proud husband after 10 years of marriage and decided my mantra would be to “work to live” rather than to “live to work”. I wanted to live life to the full, while I still could. Any insurance salesmen were sent off with a flea in their ear when I informed them that I knew that I would not live to see a pension. The only information that I had at the time was from looking up MS at the local library where words such as progressive and degenerative seemed to sum up the prognosis.

I also discovered my local branch of the MS Society and was passionate about raising money and getting involved. From talking to other people and reading correct information, I found a reason why I was tired all of the time. I found out being totally incapacitated in hot weather was nothing to do with sunstroke at all. I did not have recurrent cystitis any more! Learning more and more about the disease helped me to manage my life in a much better way. As each year passed, the symptoms became less chronic.

I enjoyed my voluntary work so much I made a career out of it, and started working for another charity full time. I recall being told when I went for my interview that I seemed to consider having MS as being an asset for the job, rather than a hindrance. A whole new world opened up for me and I enjoyed the work so much that I studied for a degree in Charity Law & Finance. I became involved with the MS Society at national level, taking on many different challenges. My accounting skills were put to good use when I became the Assistant National Treasurer, and I then became involved at International level.

I would be wrong to imply that MS does not also have down sides. I am extremely lucky in that my relapses ceased and the symptoms just became very slowly worse over the years. I get extremely frustrated when I cannot walk to places that I want to visit, or get on and sort the garden out when it looks a mess. I may have used the fact that I have MS to my advantage, but sacrificed other things along the way. I decided to be sterilised rather than run the risk of having a child and making the symptoms worse (not a school of thought that exists today). All of my spare time is taken up with voluntary work, leaving very little room for anything or anyone else.

I have always been very selective on who I tell about my MS – a lot of casual acquaintances have no idea. This has not always worked to my advantage, when one employer refused to believe that I had MS when I had to take time off from work due to a relapse! Equally, because I am seen to be generally fit, people treat me as such. In order to be the same as everyone else I sometimes find myself having to stand for long periods - they do not realise that the next day will have to be spent in complete bed rest for me.

A conversation in the pub recently made me realise in some ways how fortunate I am. I was complaining that I had attended 2 different Board meetings in London on the same day, one of which had been a very early start, when I was asked if I found my work stressful.

I thought about this and realised that my life was not stressful like my colleagues that work for large corporations. I really enjoy what I do (you have to if you are not being paid!) The people that I work with and meet are some of the finest in the world, and I feel enriched for knowing them. Having MS may make me feel tired and fall asleep every day shortly after 8pm, but I wonder what I would have done if MS had not come into my life……I suspect that I would not be able to say that I found it quite so fulfilling.

Sue Tilley is also Chair of the Persons with MS International Committee.