To cope with serious diagnosis, grieve first

There’s no right way to grieve for the loss of anyone or anything. And that’s true for loved ones, close friends, beloved pets or even your own health when given a diagnosis of multiple sclerosis or some other disabling disease.

In all cases you are affected by grief; it is only natural. Ok, with a disease like MS that is not fatal in itself, you are not sad because of a death but soon after a neurologist gives you the news it’s natural to grieve for the healthy life you have lost.

Experts will tell you that grief is a five-stage process and I am not going to argue with them. However, it is important to realise that we are all different and that there is no right or wrong way to come to terms with a loss like this.

The five stages that I have mentioned are sometimes described slightly differently but, basically, are:

Denial: “No, that can’t be right. It’s not true.”

Anger: “The doctor took too long to diagnose it.”; “It’s (insert anyone here, even God)’s fault.”

Bargaining: “What if I had realised earlier that something was wrong?”; “What if I had gone to the doctor sooner?”; “What if I had lived a healthier lifestyle?”

Depression: “Why me? Why have I got this awful disease?”; “Why can´t I (do this or that)?”

Acceptance: “I may have this disease but I am going to live the best life that I can.”

MS_DiagnosisWhen you first find out that your symptoms and test results add up to a diagnosis of MS, it can be hard to grasp the import of the words.  Multiple sclerosis is a term you have probably heard but don’t know much about; “didn’t Mary have that? She was in a wheelchair.”

In my case, probably because I was relieved to know what was wrong, I skipped the first four stages and went straight to acceptance and then to learning more.

Talking of learning, as soon as you can, and again this is different for everyone, it’s time to find out more about MS and the good news is that there are plenty of sources of authoritative information on the internet

If you haven’t slipped into a black pool of suffering and despair, it’s now time to learn to cope with your abilities.

“Abilities? Surely I need to cope with my disabilities,” I can hear you say.

No, you don’t. You really need to focus on what you can do and how to do it. Yes, of course, remember good times from your past but accept that is now the past. It is now time to look to the present and future without fear but with planning.

For example, if you decide to move, you might want to consider choosing a bungalow or ground floor apartment; you may want to think about a level access. You might want to move to a property that has a bathroom that could be converted to a wet room.

Even if you can walk unaided now, you may want to consider moving to somewhere that could be easily adapted to enable wheelchair access. You may never need it but forward planning is best. An occupational therapist once told me that, when planning home adaptations for someone with a disability, she is not allowed to work on the current level of the person’s ability but has to think what it could be like 20 years ahead.


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MS diagnosis – It’s normal to grieve

modern-day-ms_edited teresa wright-johnson

Reading a great article It is normal to grieve after MS diagnosis by Teresa Wright-Johnson1 in Modern Day MS, and seeing that depression was part of her grieving process, reminded me of two things.

First is that grief is ok. Whatever you are grieving about, whether it is the loss of someone close to you, or a pet that was part of your family, or the projected loss of your future through the diagnosis of MS or another chronic illness, it is a natural process. But, although there are several recognised steps said to be involved, the most important thing to remember is that all grief is personal. Don’t let anyone tell you that you have to do this or that. Everyone grieves in their own way; no need to feel guilty, you do it your way.

Secondly, before moving to Spain last November, I used to belong to the MS Register2 which asks people like me to provide information on life with MS in the UK. Some of the regular questionnaires were about physical aspects such as mobility, balance and so on. But others were about mental states including attitudes and depression. Now, here, I must add that my description of MS Register is an extremely simplified one; there’s much more to it than that. So, if you live in the UK and have MS, I urge you to join. Anyway, my point is that the Register includes questions about your happiness, your ability to laugh and enjoy things as well as depression itself.

In her article, Teresa readily admits that depression was part of her grieving process. She writes:

Depression has become a familiar foe. We travel together more often than I am comfortable admitting. Depression is a bandit and has the capacity to steal hope and joy. Both are needed in order to fight adversity. Reflection became a major component in my life. It felt as though I watched my entire life pass by. I couldn’t stop thinking about who I used to be before my diagnosis and I longed for the loss of the woman I was before multiple sclerosis.

At times, it feels as though my life took a wrong turn down a one-way street with no road leading back to my original, vivacious and authentic self. The longing I felt and still feel at times is overwhelming and often inexplicable. It’s ironic how you can be surrounded by tons of people and still feel alone, fighting a battle only you know exists.

I must have been very lucky as, so far at least, I have not been depressed in the 14 years since my diagnosis with MS. Yes, occasionally I get frustrated that I cannot do something – but not depressed. Whatever is the future is just that, the future. I won’t worry now about something that, hopefully, may never happen.



1 To read Teresa Wright-Johnson’s full article in Modern Day MS, follow this link:

2 If you have MS, live in the UK and would like to know more about MS Register, follow this link: