How Do You Love Your Body with Chronic Illness?

We live in a society that is all about physical appearance, body shaming and diet culture. I can’t tell you the amount of junk emails I receive in a week from companies promoting their latest fad diet, or advertising a new fitness app. We are being programmed by the media and social platforms to obsess over the calories in our food and rejecting food groups such as carbohydrates, not realising the impact it has on our relationships with food and ourselves.

Add to this a chronic illness and the mental health impact is tenfold, especially if you already have a strained relationship with your body to begin with.

Being in a Chronically Ill Body

Being chronically ill changes so much for you in your life and day-to-day. Depending on the chronic illness you have, your body can also change from day to day, sometimes even hour to hour. In a lot of chronic illnesses, Endometriosis, Fibromyalgia, M.E or Crohn’s Disease as examples, you can experience severe swelling in joints, all over body inflammation including lymph nodes and bloating and swelling in the bowels, womb and pelvis. There are usually no warning signs of when these symptoms may occur and the difficulty with this is that it can really affect your personal mental view of your body image and leave you feeling quite hopeless. You could be down ‘pounds’ or ‘inches’ at the start of the week but then all of a sudden, gain 5lbs and three inches because of the start of a flare.

For many in the chronically ill community, the symptoms of the illnesses can be depleting. They can bring so much pain that it is a great feat if they can make it out of bed or the house, never mind managing to do any kind of walking or exercise. It’s hard to explain to someone who is in an ‘able body’ what it is like trying to move with so much pain searing through your body and the ‘ton weight’ heaviness of your muscles at the same time. You feel like even the slightest movement sometimes will be enough to make you pass out, especially if your whole body is in ‘flare’ and you’re exhausted, feeling nauseated, your muscles and bones screaming at you for a break and then your stomach, bowels and womb join in the mix. Yoga and meditation can help a lot of things but if you don’t know whether you’re going to pass out or have an accident partway through, it’s hard to get the ‘get up and go’ mentality.

Being chronically ill also sets you in a constant cycle of grief too. There is always something that comes along to remind you of who you used to be and what you used to be able to achieve. It doesn’t matter if you’re newly diagnosed or a veteran in the community; you could be having a few steady months, managing to maintain your symptoms and then one simple task or passing comment is all it takes to remind you that this isn’t what you wanted for your life. The following spiral can be deep and long but you hit rock bottom pretty quickly. It can have such a jarring effect on your mental and emotional health, as well as your physical health. It leads to a vicious cycle of punishing yourself, feeling frustration and anger with your body. Then when you eat and know you can’t exercise much, or at all for many, the depression kicks back in again.

Medications can also be a huge factor of weight gain for the chronically ill and with some illnesses, it’s very much a ‘take this and see what happens’ approach, so you can’t always be sure which medication has the worst side effects.

Body Dysmorphic Disorder - Trigger warning

I am a chronically ill person who has suffered for almost thirty years with the negative impact of society and the pressure of body image. I didn’t know until recent years that I’ve actually been battling a condition called Body Dysmorphic Disorder (BDD) or sometimes referred also as Body Dysmorphia.

I hate getting my photo taken because no matter what stage I am at, I see myself as some sort of marshmallow-shaped person and I fixate on that, instead of seeing a moment in my life with my family captured. It saddens me that I don’t have many photos with my boys that aren’t ‘selfies’ and I am working hard on my mindset to remedy this, but it’s not at all an easy job to battle those deep-rooted demons. Chronic illness has been a burden for me in so many ways but it has absolutely wrecked my mental health the most, especially in regards to body image and self-esteem. I have post-it notes around my bedroom mirror, reasons why I should love the person I see in that mirror that actually can't be reflected in it. I have anxiety about being on camera for video calls and about going to events with lots of people seeing how I look. I stress for weeks before going to an event, trip or gig about what I’m going to wear because I don’t think I’ll look or feel good in anything.

I must make it clear that I don’t actually worry about what others will think of me, it is about how I feel about myself and how I feel I am being perceived. I know when I have my rational mind in check that the majority of people are not going to care about me as I pass by or if they see me at an event, they won’t think of me at all but BDD makes me think they are judging me because I am judging myself and comparing myself to others. It’s not the best situation for a chronically ill person as there is already so much that has been taken away from me compared to someone who is ‘able bodied’.

Chronic Illness vs Fitness and Medical Professionals

As I have mentioned already in this article, many of the symptoms experienced by chronically ill people make it very difficult for them to be able to exercise. Each illness has its own spectrum so not all sufferers get the same symptoms and it can be experienced on a range of levels. This is one of the many reasons that there aren't ‘cures’ or a lot of knowledge in the medical field for many chronic illnesses; it is too varied to determine.

Until very recently in 2021, Graded Exercise Therapy (GET) was a part of the treatment suggestion plan for M.E and other chronic illnesses. There were calls for years from the community to have this stricken from treatment for managing symptoms. This was because the majority actually found that this exacerbated their symptoms and took them back two steps for every one they took forward. The medical field ignored pleas for years and at consultations, I myself was often told that exercise should be upheld and I felt very ignored and frustrated. I was telling the medical professional about my symptoms and they were focusing on movement and my weight, both of which were huge stressors for me.

It is very clear that many medical professionals lack the understanding and knowledge to provide adequate healthcare and support for the chronic illness community in general; and it doesn’t just stop at the typical symptoms. As mentioned earlier I have BDD and I recently saw a nurse for an asthma review. In the review she told me, not asked, to get on the scales. When I said “No, I’m sorry, I don’t get on scales. I have Body Dysmorphia and I am trying to not track my weight or see myself as a number”, the nurse literally laughed at me and said “Then don’t look, I won’t tell you”. This is absolutely not on. In our changing society, where consent is being questioned and issues around it brought to light, this attitude and code of conduct is detrimental to patients and their wellbeing. Since this, my mental health in regards to my BDD has been the worst it’s been all year and it has taken a lot to try and bring it back to where it was. Due to this lack of understanding and education in the medical profession, the fitness industry doesn’t seem to understand the impact and spectrum of chronic illness either.

The fitness industry is always evolving and I have noticed a lot of personal trainers on social media are changing their viewpoint when it comes to gyms, gym etiquette and how to get the best results for clients by focusing on mental health over physical health. I’m very lucky to know Dan Hancock, also known as The Mental Health PT, who has been doing a remarkable job in trying to change the view of the fitness industry. He has been showing that focusing on results based on how a person feels, instead of measurements and numbers, is actually more impactful for their overall wellbeing, in and out of a gym. I wholeheartedly agree with Dan’s ethos and I think it is amazing that he’s making headway with this. However, when it comes to the chronically ill community, it is still going to take more.

There are no gyms or fitness apps that cater for chronically ill or disabled people. Even those that say they cater for all fitness levels and have a ‘modifier’ still aren’t operating at the correct level for chronically ill people. I have tried many different packages and apps over the last ten years of being chronically ill, and I have found that even the yoga-based ones go at a pace that chronically ill people just can’t keep up. If you are at a stage where you are able to add exercise into your routine, it needs to still be at a ‘maintenance mode’. We can’t be moving up and down or side to side, as our balance is easily affected. Doing the moves in a ‘HIIT’ workout (High Intensity Interval Training), uses up all of our energy; the spoons are dirtied and in the sink for the whole day.

The Fear of Public Stigma

One of the many fears of chronically ill people is that they will have their better days held against them. These days may only come along once or twice every few weeks for some and the temptation is always there to do so much when you are feeling more able, that you risk burning yourself out. Many of the chronically ill community would love to be more active and some may choose to be on their ‘better’ days, but we often find that is when the stigma comes along most:

“I thought you were ill? How come you managed to walk today but said you were in too much pain and too tired last week?”

“You can’t really be ill if you have the energy to do a swim”.

You live in fear of always being scrutinised and having your every move judged. If you’re actively trying to do more to maintain your muscle mass and help your joints with some mild walking, yoga or swimming then you are a fraud, a misrepresentation to the chronic illness community. However, if you are in bed or on the couch resting at noon because the day has already been too much for you, you are lazy and not trying hard enough. You can’t win.

Body Positivity vs Body Neutrality

In my personal life I have tried to find a lot of different mindsets to help me cope with body image. A lot of people now know about the Body Positivity movement after its popularity on social media over the last few years. At its core, Body Positivity wants to encourage everyone to accept each other as they are and remove judgement. The movement is about boosting self-esteem and removing negative name calling and bullying over body image. I absolutely love the core idea of this; everyone is built differently and you should be allowed to be unapologetically yourself in this life without any judgement.

However, the issue I have with body positivity is that it still fixates a lot on body image and can potentially become toxically positive. For someone who is chronically ill, thinking about your body image can be really upsetting and the pressure to be positive about your body, when it is another reminder that you are not who you once were, is also a very difficult thing to do, taking a lot of energy.

The Body Neutrality movement is something that has gained traction in the last few years and is the middle ground between body positivity and body negativity. It is the idea that you can exist without having to think about your body one way or the other, positively or negatively. It also brings in the element of thinking about what your body can do, instead of the way it looks. This, again, is absolutely a wonderful thing. Life is too short to be worried about what size you are or what number you are from one week to the next. Our bodies in general are amazing things; they can bring new life into the world, they can move in amazing ways and our organs and skin have mind-blowing processes that we often take for granted. This is still a difficult movement to get fully behind when you are chronically ill, however, when you battle your body each day. It fights itself, constantly. Often, we have lost functions that we used to have. So celebrating our bodies’ abilities isn’t something that always comes easily or can be used to help our image of ourselves.

Conclusion

It is rare these days to meet someone who is one hundred percent confident in themselves, their bodies and their abilities. But when chronic illness is a reality for you, it strips you of your whole identity. You have to learn how to live in a new body that is constantly changing and battling through. It can be so difficult in the midst of all that to not be unkind to yourself and to live with compassion, especially for yourself and your own body. It is the easiest thing to say “You are not your illness” and as much as that may be true, it takes a lot to separate you from it when you’re chronically ill. Making sure you take time to love yourself in ways that nourish your body, mind and soul is most important. Don’t allow your mind to bully your body - it is going through enough as it is.