Health Magazine

Tackling the Desperate Isolation the Come with Chronic Illness

By Cass
Hi All,
Today I am going to get a bit more in depth, a bit more personal and let you into my world of isolation. Again, as always with every post my only aim is to help others and let you know that it is normal to feel like this. I am comfortable enough within my own journey to share my thoughts, they may not be 100% representative of your journey but I never want any one on this planet to feel alone.
Tackling the Desperate Isolation the come with Chronic Illness
Isolation, for me, is worse than all the pain, fear and medications which is a statement you may well find difficult to understand. That doesn't mean that I don't feel rubbish the majority of the time, I do, but mental health is by far harder to overcome. Over the past few years I have become more and more mentally isolated. Maybe not physically, in fact I have a great support network around me, but mental isolation can be just as draining. I will also talk about physical isolation and how the two go hand in hand - so here goes, bear with me, I may well have to stop and come back to this post when I can control my emotions.
Who do I turn to when no one understands
Realising and coming to terms with the fact that no one can 100% understand what you are going through is the toughest thing for me. Don't get me wrong, people do understand that I am ill, in pain and get brain fog, but what they can't do is relate to it within their own lives. I cannot understand what my best friend who has an eating disorder is going through, even though I try, I read up about it and I am a trained art therapist - I still cannot relate to it because it is not happening to me. This is fine, but what happens when you turn inside for someone to get what the heck you are talking about.
Who can I go to who will understand what I mean when I say "I feel like my joints have locked up", "I've not slept for 3 days because of the pain" or the classic "I got to the cash machine and could not remember my pin number". I do have people I can say these things to, but the answers are never quite right and that is not their fault. It must be hard for them to see me struggle and they try their best, but without the answers that I need what can I do.
Tackling the Desperate Isolation the come with Chronic Illness
This is the first stage that I feel my isolation begins. I desperately need to have some answers that I can relate to or even come close to what I am feeling, so desperate that sometimes I want to scream the house down at the top of my lungs. The fact of the matter is that I may never have anyone around me that can 100% understand, BUT I do have people around me that love me and want to help - which is more than I could ever ask for. For the other help I need, the understanding, I have used this blog to get everything out that I need too.
Here are some of the steps I have taken to help myself;
  • Look at the people that I do have that truly want to understand as much as they can.
  • Try to use online support groups for more specific disease questions.
  • Remember that I am loved, even when I am at my lowest.
  • Remind myself that others cannot understand 100% and that that is ok.
  • Turn to specific people at specific times - doctors, counselors, friends, family - they are all different support options.
  • Continue to write as my outlet for grief - you will have something you do that helps too.

Being with a room full of people yet feeling alone
This is a very common feeling that I would say many of us will feel at some point, whether or not we have an illness. I can be surrounded by love and still feel like I am living in a dream...a bad one that never ends. Maybe this is down to the brain fog, maybe it is because everyday is the same for me and will be for a long time, or maybe it is because I simply haven't found the strength yet to turn to others and ask for help.
There is something so integral to the journey of chronic illness and mental isolation, a part of it that you cannot put into words - however hard I am trying here. People will help me, people will care, they will love and this is all I need. But my fight will carry on through the darkest days and this is a fight that I am in alone - that is isolating. So when I am in a room full of love, on those darkest days, all I can do to stop the isolation is feed off other peoples smiles and words. This way I can take myself away, be distracted from my isolating thoughts and have fun with new stories about others lives.
The power of listening and smiling has never been so great as it is in those moments.
Physical isolation and the fear that comes with that
For many years I worked from home. Some of this was down to being ill a lot of the time and some of it was down to circumstance. These were probably the darkest days that I had. I was trying to come to terms with my health, I had endless infections...shingles, bone infections and scarlet fever...and on and on. I would go through my days completely alone, not seeing another soul until the evenings and it was heartbreaking. It didn't help that I had moved to a new town and knew very few people.
Tackling the Desperate Isolation the come with Chronic Illness
All the feelings I ave discussed before were heightened as I didn't have anyone to really explain how I felt too, then there was the fact that some days I simply didn't speak. I had to do something, but what??
This is where I developed a new routine, I had to get up and get out, before I lost my mind. Now I have never been a very confident person when it comes to meeting new people. I certainly would never be able to chat to a stranger in a coffee shop, but I needed to know. I began by going to the same coffee shop everyday, with my laptop and here I would stay for as long as I felt well enough to. Eventually over time, I grew to know the staff and regular customers. Sometimes they would talk to me, other times not, but I was around other people so it didn't matter to me at all.
I continued this pattern for the entirety of my time working freelance. Some days I would incorporate a walk, buy a magazine and sit in the park, other days I would have a quick coffee and then leave. Just this small break from the 4 walls of my flat gave me the boost I needed.
Here are some quick tips as an overview to remind you that there are people who care - me for one!
  1. Don't internalise your feelings, even if you believe others won't understand
  2. Never let anyone make light of your fight
  3. Know that some friends may not stick around and KNOW that this is their problem not yours!!! - I have lost many friends, but gained so much more!
  4. Try not to stay inside by yourself all day. If you can get out and about, then do so.
  5. Remind yourself daily of all the people who love you and are helping you!
  6. Set up a support network of doctors, counselors etc who can help you with the emotional side as well as the physical.
  7. Recognise the signs of depression - isolation can lead to mental health issues - and know where you can turn to for help.
  8. Sign up to support groups online - Health Unlocked is great and you can always visit my Facebook Page to vent, ask questions or say hello. These are great for those questions that no one else can understand
  9. If you can no longer work, then find something to fill your day with that makes you happy. Learn a new skill, take up a hobby or read a good book.
  10. Remind yourself daily to SMILE! The power of a smile is almighty.

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