I came across many blog posts that say chronic illness is NOT a competition. I believe that no one should compare their illness or pain to another person’s – because how do we really know what the other person is feeling? However, I haven’t discovered many discussions about what happens when chronic illness DOES turn into a competition.This blog post may ruffle a few feathers but I think this is an important topic to explore.
Comparing patient’s conditions/ pain is the challenge many doctors are faced with. In particular, places are highly competitive to get on inpatient and outpatient physiotherapy rehabilitation programmes, mental health wards and therapy. Alongside, eating disorder centres and for bladder instillations. In some cases, vulnerable peoples routine tests that came back clear or their physical appearance looked well on assessment meant their symptoms were dismissed and they didn’t reach an official diagnosis.
And… unfortunately, the chronic illness competition doesn’t stop there.
Online trolling can occur within and outside of the chronic illness community and your own family may not accept your illness or its severity. This post is to share others and mines experiences of not feeling ‘sick enough’ in hospital, in their family and in the online chronic illness community, with ways to overcome these challenges.
Patients ‘Not sick enough’ Experiences
“When seeking mental health treatment, they only accept people that are very ill and assume that you do not meet that standard so they cannot accept you. Every step of the way they make receiving treatment difficult because you have not been recently hospitalized or you are not homeless”.
“It is so strange to me how we humans default to competition. It’s sad to say, but yes I have doctors tell me I look good so I must be better. The MS tests in general aren’t very comprehensive so I am only a 2 on their silly scale, but even my neurologist agrees that isn’t measuring things that are impacting my life the most (pain, fatigue, dystonia, cognition). I do often feel I have to prove myself because ‘but you look so good’ to other people”.
“I could only walk a mile with difficulty, down from several miles. My physiotherapist was shocked because he could see something wrong. However, he said G.P’S weren’t taking me seriously, because I could still walk a mile – so I wasn’t considered a problem“.
I was diagnosed with anxiety disorder in 2010/2011. My grandfather passed away in 2015 and my brother in 2016. Although, I have been hospitalised before due to suicidal thoughts, I couldn’t get through to the doctor lines and was turned away many times from the psychiatric ER because they didn’t have open beds. I wanted to go to this speciality hospital but, they wouldn’t admit me there either. Eventually, I got on a partial hospitalisation program and received DBT treatment that is working well. However, many times prior I was given medication and sent away being told to wait for it to take effect”.
“When I first suspected EDS, I visited my G.P and explain my brother had been diagnosed with it. I discussed how I had very similar symptoms in terms of hyper-mobility and very poor health for years. My G.P was reluctant to refer me to a rheumatologist because I had a part-time job and told me just because my brother had the illness didn’t mean I did. Due to chasing my G.P I choose to pay to see a consultant rheumatologist privately, whereby I was diagnosed with EDS. Although for my G.P this wasn’t enough, as the EDS guidelines changed in 2017. I was then was referred to have my diagnosed reconfirmed by the NHS. After my EDS diagnosis was reconfirmed my G.P started taking me more seriously as referred me on to multiple specialists. However, initially it was an extremely frustrating experience to get a doctor to listen to me.”
Top Tips to Avoid Medical Treatment Rejection
Take Medical Letters with you
If you have a complex medical history, starting from the beginning with each new doctor can be extremely time consuming. By taking medical letters with you, doctors aren’t taking your word for it, there is proof that you have the condition/ pain and had tests carried out.
Take someone with you to your appointments
I can’t guarantee taking someone to your appointments will get you a fast track to treatment. However, I have found taking someone with me helped articulate my illness, especially when forgot to mention certain things and doctors were less keen to dismiss me.
Explain any previous treatments and the outcomes
If you tried any recommended previous treatments that were not as successful as you had hoped flag these up to your doctor. This shows that you were co-operative patient but need a more suitable alternative.
Make yourself available
I understand that having wide availability is not always possible due to family, study or work commitments. However, making yourself widely available may help you move up waiting lists. If the date you are then given is not suitable, you can re-arrange it.
Keep a Diary of your Symptoms
Keeping a diary of your symptoms can help to identify trends in your pain and illness.
Research Treatments before your Appointment
Researching the treatment you are trying to get on shows that you understand what the programmes entails. It can also help manage your expectations of what it can offer you.
Asking questions helps you to understand what treatment is being offered and shows the doctor your interest and desire to get better. Also, if you don’t have medical insurance – you will be sure to want to know the cost.
Appeal the Decision
If you are rejected from medical treatment, then there is usually a process for you to make a written appeal. If you are located in the U.K or U.S, the Freedom of Information Act can help find more information on why a negative decision was made and may support your appeal case.
When your ‘Not sick enough’ in the Family
“Totally feel this, from Doctors who refuse to believe there’s a problem to some of the groups that make me doubt my own illness, to my own parents (who are both ill) not understanding why I can’t do things, etc. Then the exact same thing with mental health, and the sh*tshow of the two combined with the NHS, seriously tempted to give up all together some days”.
“I am constantly dealing with internalised thoughts about not being enough because my parents always encouraged me never to seek treatment for physical alignments unless it was very obviously life threatening. We had no ER trips rule after I went to the ER on my own following a car accident where I was having major headaches and neck pain (which in retrospect was probably an increased awareness of existing pain). Even now they tell me not to let my doctor refer me for any diagnostic testing because it will ‘cost extra’. I imagine it’s just so deeply rooted in them growing up in poverty and learning to ignore their own problems.
My dad has diabetes and consistently ignores his own pain and his need for insulin. My mom had a tumor that affected her life that she fought for 9 years, and she still carries skepticism of illness. This has been detrimental to their and my own outlook on mental health. About a year ago I was diagnosed with a spine deformation that probably could have been treated when I was a child. My parents were in shock because they always believe there was nothing wrong with me.”
“I think a lot of can relate to this sentiment. In my life it’s been more my family justifying why I should or shouldn’t be able to do something because ‘you don’t look that bad’ or worse from a ‘sister that is a nurse’ after I explained why I have to avoid stressful situations because it makes my symptoms worse. People are so clueless sometimes.
“Coming from a family that all suffer at least one chronic illness, can be very stressful if we have flares up at the same time. If me and my brother need help my parents are faced with the decision who needs the help more. Things we could need help with are being taken to a hospital appointment, having our washing done, having a meal cooked for us. Due to my parents being our carers, and suffering themselves leads to a great amount of tension in the home”.
Lets raise awareness of chronic illness together (you can select your favourite colour). 50% profit is donated to Ehlers Danlos Support U.K. The spoon charms are a reference to the Spoon theory.
Ways to talk to loved ones about your chronic illness
Write a letter
Writing a letter can help you articulate your thoughts without confrontation. It also gives the reader a chance to process what you have written and to write down any questions.
Discuss your chronic illness in counselling
Having open discussions about your chronic illness in a controlled environment can help you combat any issues without you or your loved ones, before the conversations get heated.
Give them a book to read about your chronic illness
The same chronic illness will vary in different patients, but a better holistic understanding your chronic illness, may make your friends or family more willing to listen to you.
Online support groups
Online support groups for friends and family or your chronic illness, will most probably exist on Facebook will a little search. These groups are safe places for your loved ones to ask any questions to support you and your illness.
Online ‘Not Sick enough’ Experiences
“Yeah for some people, it’s a p*ssing contest over who is sicker. I once had someone say I must not be very sick because I decorated my Christmas tree. Ridiculous”.
“As I have become connected with others who struggle with chronic illness, I have sadly started to sense this competition in the community. It can almost turn into a kind of social club where if your illness isn’t severe enough, you do not qualify for acceptance. At times I found the chronic illness community to be slightly toxic and unhelpful.
Reading the posts would cause me to fixate on my symptoms and get caught in the comparison tramp. These groups do have a lot of positive aspects and are wonderful for certain seasons of the life/illness, but I definitely advise caution. My desire is to encourage others to find their identities outside of illness instead of within it, and to inspire them to still fully live”.
“I have never been personally attacked on social media. However, I have seen people who are not officially diagnosed with a chronic illness and told that they may be suffering from Munchausen syndrome. This is a psychological illness, that involves someone pretending to be sick to draw attention to themselves. I think it is horrible to see others judge people in this way. These people are not medically trained and we all were undiagnosed at some point, looking for some extra support”.
Ways to deal with strangers who don’t believe your chronic illness
If someone has been aggressive or rude towards you, you can block them to the social media platform or the administrators of the group. Taking screenshots of the conversation make help and give you back your safe place.
If the person is harassing you, then blocking them can avoid getting into arguments that can make you feel stressed and trigger your symptoms.
Take a break from social media
If you feel you are having problems with more than one person, taking a break from social media all together can help clear your mind and re-evaluate if you want to keep sharing your story online.
Remain calm and carry on
At the end of the day, you know your symptoms and how your chronic illness affects you – so try to not worry about strangers opinions! If you are being attacked because you are undiagnosed, you can calmly explain you are on your journey to diagnosis and ask to leave the conversation there.
Sharing is Caring
I would love if you shared this post to help people who are experiencing not ‘feeling sick’ enough to show them their not alone and ways to start to overcome it.
Have your Say
Have you or know someone who has ever experienced not feeling ‘sick enough’? If so I would love to hear about it below.
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