Being diagnosed with any long term condition or illness can be a stressful and emotional time, with lots of information to take on board, and concern about the future. When that diagnosis is for an illness which may affect your long term mobility and health, it can sometimes bring with it unexpected issues and feelings.

The definition of a degenerative illness is a disease in which the function or structure of the affected tissues or organs changes for the worse over time. Common examples are osteoarthritis, Alzheimer’s disease, Amyotrophic lateral sclerosis (ALS), Huntington’s disease, Parkinson’s disease, Multiple Sclerosis, and Rheumatoid arthritis.

Although at first after the diagnosis it might be easy to feel a bit lost, there are many groups, organizations and charities who are designed to help people deal with long term conditions and degenerative illnesses. We look at other ideas which might be of help in those first days, weeks and months after diagnosis.

Be gentle with yourself

You cannot control how you feel about diagnosis. Although people often go through a similar set of phases after a big diagnosis, everyone responds slightly differently and needs to deal with the news in their own way.

After a diagnosis people often find they go through the grief process, and this will be unique to you and your set of circumstances. Don’t expect any particular thing from yourself, and don’t try to make yourself feel a certain way. Once the shock has subsided, you can start to take positive action as you need. 

Seek out charities and organizations

Often your first and most important port of call is to get in touch with a charity dedicated to the illness you have been diagnosed with. Whereas you can get medical advice from your physician and medical team, a charity will have expertise in the emotional and practical support that you need, and should have a wealth of experience in seeing you through the early stages of diagnosis. Sometimes they will have a careline to call and speak to someone who understands how you are feeling or can help you with a particular worry you might have.

Choose who and how you tell

At times of big life events the reactions of friends and family can be a great comfort or add further strain, depending on your relationship. Who you share your news with is up to you, but equally don’t take on the burden of worrying how they will feel – it’s important you have people to support you. Sharing your news and concerns generally helps provide a helpful network of people who can understand, and go through the ups and downs with you.

See a therapist

Seeing a professional therapist after being diagnosed with a long term or degenerative illness can give you some emotional space to help deal with the life changes such a diagnosis can bring. A therapist can enable you to say things you might not share with your loved ones, and completely open up about how you’re feeling which can lead to a healthier outlook.

Practical plans for the future

Once you have a realistic idea of what is in the future you can start to put provisions in place to make life as easy as possible as time goes on. This might be looking for sources of financial help, or adapting your home or personal devices to make sure you can stay as independent as possible for longer. You may wish to research mobility devices or ways to make your home more accessible.

Many people find that doing this at an early stage helps to give them a renewed sense of control of the situation and helps to provide more peace of mind knowing big decisions about the future are taken care of.

Join a support group

We all need people who understand us. Groups for people with different conditions and illnesses can be an invaluable source of support, where people can share how they feel, as well as share practical tricks, tips and advice on practical subjects. Often support groups are put together by charities with different groups local towns. Sometimes by becoming involved in a charity not only can you get support from others but you can find that in offering help to others you build a network as well as a sense of fulfillment.