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  • Katty

7 Stages of Managing a Long Term Illness

These stages relate to my own experiences of being diagnosed, processing and living with Lupus. I believe it can be used as a guide for coping and managing other long term illnesses.

1. Symtoms
  • Knowing what symptoms to look out for.

  • Being educated and aware of different illnesses can help you better identify your symptoms.

  • Don't be afraid to seek medical help.

  • De-stigmatising having an illness is important so that you feel less self-conscious about sharing your symptoms. It allows you to be heard, believed and feel less judged.

2. Diagnosis
  • Trying to get a diagnosis can be hard, so finally getting answers can be life changing.

  • Finally knowing the reasons for your symptoms is a relief

  • Fear of the unknown, not knowing much about your Illness can be scary

  • Diagnosis helps to acknowledge you have an illness and enables you to access the right support(eg. Specialist organisations and support groups)

  • No more being in denial because you know the reasons for your symptoms, a diagnosis can give you clarity.

  • Genetic history - Knowing your family medical history can help understand your diagnosis.

3. Learning & Understanding
  • Being properly educated by getting support from reliable sources

  • Get Information from known and trusted medical professionals, and try not to be overwhelmed by internet searches with misinformation.

  • Knowing and being aware of common hurdles (mental health challenges).

  • Acknowledging these challenges are as important as being aware of the physical illness and its impact on you.

4. Treatment
  • Finding the best and right treatment for you is important, and accepting it might have to change from time to time. As sometimes this can be discouraging, but this isn’t necessarily a bad thing as it often means improved health!

  • Educating yourself about different medicines available and the effects.

  • Following medical advice is important, but don’t be afraid to ask questions particularly if you're not happy with side effects that impact your quality of life.

  • Although sometimes it can be overwhelming taking lots of different medications, the key to moving forward with your illness is taking your medication so it can improve your health.

5. Grief & Loss
  • Having a long term illness can have a significant impact on on day to day life. At times it feels as if you've lost a part of yourself, giving yourself time to grieve over the big changes in your life is important.

  • Acknowledge things that you’ve lost and can no longer do, but remember that some things are still achievable.

  • Allow yourself to be sad without feeling guilty

  • Be open to support during this process, and try not to be afraid to say how you really feel.

6. Adapting
  • Finding a way to look at life from a new angle and perspective can help you accept changes that have occurred because of your illness.

  • Learning to manage and cope in your own way. I've always used different forms of escapism (Music & Art) to manage.

  • Understanding that even if you have a bad day it will get better.

  • Finding new ways to do the things you thought you couldn’t, and using resources around that might help. You don’t have to do this alone, you’re not the only person having these experiences and maybe someone else’s experience/ support might help you.

  • Accepting that it’s ok to be different. It's s easy to say but can be hard to do.

7. Accepting & Growing
  • Accepting your illness, its impact on your life physically and mentally is key to adapting to the changes and making life manageable.

  • It's important to find ways to continue to grow despite hurdles. It’s ok to seek advice to do this, but make sure you feel confident and that your voice is heard.

  • Knowing that sometimes life will be difficult but knowing and believing you can find your own place and purpose is what I'm trying to advocate.

My hope is to be able to continue to share these stages I’ve created and help guide as many people as I can through their own journey. I would also like for this to help other people who don’t have any experience with a long term illness better understand what we have to go through.


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