Accepting an invisible illness

Accepting an invisible illness is a journey and doesn't happen overnight. Whether you are in the process of being diagnosed, coming to terms with a recent diagnosis, living with a long standing condition or a condition that has always been a part of you, the journey to acceptance has bends twists and challenges at each milestone in your life.

I grew up with an invisible condition my mind set was very much that one day if I worked hard enough, ignored the pain enough and fought my body at every step one day I would miraculously be ' normal' 'accepted' 'worthy' ( place any politically incorrect term here). Sadly at my times my desire to be 'normal' instead sabotaged my chances. The more people I have spoken to the more this seems a common attitude that acceptance of an illness equals defeat - think of the words we use - people fight off a virus, infection, cancer so we spend energy ( sometimes in low reserves fighting ourselves) no one can see the pain, fatigue, exhaustion, frustration, constant nausea, distress or panic. In general people shy away from talking about it from validating how we feel so it is common to try and ignore it.

We can end up at war with ourselves instead of nurturing ourselves to be as healthy as possible. We may deny our limitations, stop mentioning symptoms to family and friends, stop asking for that little bit of help. We don't look sick therefore it's not real or we are being melodramatic. We may socially isolate ourselves because its easier than explaining to get ' that' look. Isolating ourselves isnt healthy, maybe people will never fully understand but we can be okay with that. We are still amazing and worthy.

Some steps to acceptance in no particular order:

Realising that your body is not the enemy - your body is the shell of who you are, it needs and deserve to be nourished and protected as much as anyone elses. Perhaps even more. It is common to believe that you dont deserve that good food or rest when you feel it has let you down but you can help it and you achieve your fullest potential by being mindful of how you treat it. You deserve to treat yourself with compassion not hate and anger. Be nice to you, you are surviving and you deserve to be rewarded

It is not your fault you have a health problem - it is not some divine message from the universe about how awful a person you are. The body and mind are amazing but sometimes they malfunction. It is what it is and nothing you did deserves the pain you are going through

Life is unpredictable and not always within our control, that can be a scary thought but its true. Learn to try and accept the things we cant change, change the things we can and be mindful of the difference.

Stop worrying about what others think, they cannot see your illness or pain or struggle. They cannot feel how you are feeling. Often people cannot understand nor want to put themselves in the shoes of someone who is ill but regardless of their opinions it is your experience and however you feel is real valid and okay.

Stay close to those who love and support you, it is okay to lean on them and ask for their help when needed - its not a sign of weakness. If they were struggling and you were in a position to help, you wouldnt want them to not ask would you? Remember to thank you - those are powerful words that let people know we are grateful, they may not have been able to do the task exactly how you would yourself but say thank you to them for caring and trying.

Have an expectation that people may let you down, it happens, it happens to everyone ill or not. Things happen and people dont always keep their word but it is not personal against you - its not because you deserve to be.

Play to your strengths, there is probably a list of a hundred things you cant manage or achieve. Where is the positive list of things you can do? The new things you can try?

Learn to forgive yourself. Having a hard time and not looking after yourself as you should, learn from it. Think about why you feel that way. Forgive yourself repeatedly no illness comes with a handbook and this wasnt how you envisioned your life. You are doing the best you can at the time no matter how good or awful you judge that in hindsight

Be a good friend to others - you may be watching them live the life you wished for and feel envious or resentful. Being happy for them is important to them and maintaining that relationship, it is not their fault you are ill or your own. Be a good friend help out when you are able even in ways that feel insignificant and tiny. Continue to make the friendship/ relationship two-way.

Its okay to feel lonely but you are not alone. Connect to others with the same condition have those frank discussions about all the embarrassing details that you cant openly share. Find ways of enjoying time by yourself

Learn your limits and set realistic goals. Setting unachievable ambitious targets that you know deep down are unlikely to come into fruition is a way of self sabotaging. Be patient with yourself.

Acknowledge that even if you werent ill, life would still not be perfect.

It's okay to say no sometimes, no to yourself and to others. Maybe you decide to test your limits or others encourage you to, listen to your body and say no. It's healthy to be able to say that without guilt.

It's okay to feel fed up, to have a wobble, tearful day or temper tantrum. Being ill is frustrating and you are human. You do not have to be strong all of the time and crying or feeling down is not a sign of weakness or giving up. You are being true to yourself.

You are not your illness. You are the same person healthy as you are ill, it doesnt change your identity or how you relate to yourself. You may not be able to perform on the tasks you once did but you are still you! Be your own best friend and ally, be an encourager not a critic. You are doing amazing.