There are many different reactions to an MS diagnosis. Here are what some people had to say about learning they had Multiple Sclerosis:
“I thought I was going nuts and worried about becoming a hypochondriac, so when I was finally diagnosed I was relieved to finally know what was wrong with me.”
“I felt disbelief. I was devastated and felt like dying.”
“I cried for days on end. But was thankful there was a reason and it wasn’t all in my mind.”
These emotions are all part of the adjustment process. The important thing is to cope in the way that you know best, and to use the resources available: family, support groups, your local Field Worker, GP and peers. Your response to diagnosis will obviously be unique to you, but could include the following feelings:
Relief and empowerment
“At least I know why things have been going wrong. Now that I have a name for my condition, I can start finding treatments.”
Whilst no-one welcomes an MS diagnosis, having a name for the condition means no more confusion and floundering. Knowledge is empowering, so start finding out about your condition. You can’t control the diagnosis, but you can control how you deal with it. Let it be a reminder of all the good things in life, and focus on those.
“No, it isn’t, it can’t be. I’ve been feeling a bit achy because I have the flu. The funny things that have been happening to me will all go away. The neurologist doesn’t know what he is talking about. I know my own body.”
Denial is common. It is tempting to pretend everything is okay. Those who go through denial may seek a second, or third opinion, or just simply refuse to believe ‘the truth’, hoping it will all go away, that it was just a bad dream. Unfortunately, when the diagnosis is correct, the challenges it brings will have to be dealt with.
Shock and uncertainty
“Why me?” “What have I done to deserve this?”
You may feel as though you have just been handed an impossible challenge, or you may feel a sense of relief from finally having a name for all that has been going wrong. Either way your brain is trying to process all the information, and there is a lot to remember. Be patient and allow yourself time to adjust.
MS can affect day-to-day activities, and this is (understandably) frustrating. Just taking the cork out of your favourite bottle of wine, peeling potatoes, washing and drying dishes etc. can be difficult. Dropping things, doing things more slowly and not remembering as well as you used to can all lead to a feeling of frustration.
We worry about how we can pay the bills, the mortgage, the unexpected payments such as dental vists etc. We worry for our children, the adjustments that they will have to go through. We worry about our job, our ability to do certain things, our futures and that of our families. For young people, a worry might be about future parenting plans, and being able to care for children adequately. Communicating your concerns and worries to someone you trust will help you find solutions. Advice is available for any concerns you have – you could talk to your partner, family, GP, friend, Regional Society Field Worker, a counsellor, MS Nurse, other people with MS. There is always someone to approach for assistance.
Guilt and Blame
“It is all my fault I’m in this mess.”
Guilt and blame are two normal emotions. Luckily, they don’t hang around. We do move on, eventually, and learn to live with the diagnosis without looking to hang it on anything in our past, or on those close to us.
We all have hopes for the future, and dreams do not usually include a condition like MS. Although it will take time to accept and integrate your diagnosis, in the beginning you might not feel very optimistic.
You may avoid going out, and may not even want to have family around. Even if you consider yourself to be the toughest of the tough, don’t hide your feelings. The diagnosis and effects of MS can lead to depression, so be sure to monitor yourself, and seek help from professionals if you need it.
“In the first two years I was so angry with everything. But I found punching my pillow was a great release from all my built up anger. I still punch my pillow, a lot, and it still helps, even after all these years.”
MS is a serious condition. You’re entitled to be mad about the diagnosis, but you must be careful how you express it. Be careful with those who are likely to be on the receiving end of your anger, especially if you are angry at yourself. Try to express your feelings positively, without getting aggressive. Having the support of someone close to you and being able to share your concerns can help to release anger. Whatever way you get rid of your anger, be careful not to hurt those closest to you. They too will have their own issues to deal with, and the best way forward is to support each other.
How you react to different situations depends upon your personality and how you have learnt to cope with difficult situations in the past. You cannot avoid all stresses and frustrations, but you can learn ways of minimising their impact. Some important ideas include:
Sexuality is an important part of who we are. Having MS may mean that there will have to be changes in the way you relate to your partner sexually. Stress, fatigue and energy levels can have major effects on your sexual functioning, and it is important that issues are discussed openly to help you and your partner understand the affect your illness is having on you both. Be willing to adapt to changing sexual abilities and needs as there are other ways to make love, attain intimacy, and feel close to your partner. Whatever the problem or difficulty, a healthy and communicative approach is important. MS is not necessarily a barrier to fulfilling sexual experiences. Discuss your thoughts, feelings, and concerns openly. If MS is affecting your sexual functioning it is important that this is addressed earlier rather than later. You could consider talking to your GP and MS Field Worker. Read more about MS, Sexuality and Intimacy here.
Multiple Sclerosis has been compared to the ‘uninvited guest’ who becomes involved in every aspect of family life and never leaves. Families must learn to live with MS without allowing it to take over completely. The fact that MS is highly unpredictable means that no one can anticipate with any degree of confidence how the symptoms will progress, or the long-term outcome. This can have a major impact upon the stability of family life. Normal day-to-day living is often disrupted and planning for family activities and holidays takes on a different level of organisation. Family members are required to balance their roles. They need to be caring and helpful without becoming over protective and are required to support and encourage without creating unrealistic expectations. This can be difficult, and the family won’t always get it right. But, good, open and honest communication will help everyone. It is important to recognise the effect that MS is having on members of your family and to communicate with each other about it. Talk about the physical and cognitive changes that you are experiencing. Sharing information and finding ways to cope are important parts of dealing with MS. Typically, family members focus on the more physical symptoms of MS, but having those closest to you read this booklet will help them understand your emotions, and may give them insight into their own reactions. If it is not easy for your family to communicate, then consider working together with your GP, a local MS field worker, a neuropsychologist, a trusted friend, or a counsellor.
Sometimes, children are more strongly affected by the emotional distress and cognitive impairment of the parent (or sibling) with MS than by the physical disability. They also tend to view illness as something that goes away if treated, so it needs to be carefully explained that MS will affect Mum or Dad (or their brother or sister) every day. It is also important to let children know they can ask questions, and that they have support available to help them cope with the changes. Information about talking to your children about MS can be found here.
“You feel like being around people but find it hard. I can tolerate a couple of people but if I go into a room of 30 to 40 people I just feel like I need to get out of there and go home.”
MS can complicate socialising. The practical difficulties of getting out and about can affect friendships. The different lifestyle led by a person with MS may mean that some friendships are lost or changed, and there may be fewer opportunities to make new friends. Like all relationships, and as mentioned many times already, communication is the key. Help your friends to understand. Many may be a bit apprehensive and not know how to treat you any more, but information and discussion can help. Talk openly with your friends to find out what they are thinking. Other people with MS can provide support, understanding and friendship. Your Regional MS Society will hold local social groups, and the internet offers plenty of MS-related groups, which provide good opportunities for meeting others.
MS is a frustrating illness, and being a caregiver for a person with MS is demanding and emotionally exhausting. To complicate matters, the role is often in addition to regular employment and other responsibilities, adding to stress. If you have a caregiver, both you and they need ‘time out’ periods to maintain your relationship. You must both be mindful of each other’s needs, and know where and when to seek emotional, social and/or physical support elsewhere. Your Regional MS Society also provides carers with information and support. Read more about being a caregiver here.
MS changes us. It causes us to rethink our plans, goals, dreams and aspirations: some changes may be very significant, and affect several areas of our life. We all have a sense of who we are, a sense of self. It can refer to how we perceive ourselves, the kind of work we do, the activities we are involved in, the friends we have, and our place in a family that we care about. MS can play with this perception. After being diagnosed, and as you manage your MS, it may be that your emotions and confidence are all over the place. It is very important to have good support networks to help you adjust, and to help you create new plans, goals and aspiration that are compatible with having MS. Read here about some inspirational books written by other people living with MS.
There are many emotions that you might experience when you receive your initial diagnosis of MS, and feelings that may affect you (and those around you) as you live your day-to-day life with MS. The best piece of advice is don’t go it alone. Talking to others is crucial. It is important to have someone with a ready ear and an understanding of what you are going through. Likewise, it is important that persons with MS keep communication open between themselves, and others affected by their condition. This includes family, friends, medical professionals and caregivers. Effective solutions often depend upon a united approach to resolving the problem. Your GP, an independent counsellor, or a psychologist with a neurological focus, can help you and your family through periods where things may be just a bit too much. If you are not sure how to access help, ask your GP or Regional MS Society, who have skilled and experienced field workers available to help.
Remember MS is a part of you but it does not define you.
For more information please view our MSNZ Information Series booklet: Multiple Sclerosis and your emotions