Having a chronic illness is more than just being physically ill. It can also affect your psychological being in more way’s than one. Not only on a emotional level. Dealing with a diagnosis that has no cure at present. Adjusting to a new way of life. Taking medication, hospital visits and living with the effects of the illness (pain, fatigue etc.). But also with Lupus SLE (which I have) the constant attack on your systemic & immune system can alter your hormone levels. Causing mood swings, brain fog etc. Also as a result of incurring Lupus related illnesses such as chronic aneamia due to kidney disease &/or medication. Been an invisible illness comes with additional challenges because people tend to not look beyond the surface.
There are so many factor’s which in writing would be too much to mention. As our mental health is always on a continuous journey. A balancing scale of feeling good to feeling bad. Of course there are clinical mental health conditions such as schizophrenia & bipolar for example. Which we all should have awareness of. Because it’s quite easy to judge a person based on their condition. Which causes this stigma & dissociation with evaluating your own mental health. Also not understanding that any type of physical illness can affect a person’s mental health because you can’t visually see it.
With Lupus SLE dealing with fatigue can be mentally draining as well as physically. Including other factor’s such as maybe having to give up employment so financially could be a worry. Socially not having anyone to understand your tired, not feeling well &/or have to miss out on an engagement to attend hospital. Been judged as been anti social &/or experiencing low self esteem. Which I personally dealt with in the early stages of having Lupus SLE. At first I couldn’t see the light at the end of the tunnel. Having to give up work. Been in hospital month’s at a time. My body & skin went through dramatic changes. My beautiful long hair had all fallen out after vigorous courses of chemo. I was so self conscious because previously to been diagnosed with Lupus SLE I had an athletic build, very active & social. Enjoying college, freinds etc. So I never faced how society was so comfortable with voicing negative comments to your face without any understanding on how this might affect your mood or life.
One example which changed how I viewed myself was. It was a hot day so I was wearing capri pants at college. As I went to get something in the canteen. A lady said how can you walk around showing those large stretch marks on the back of your leg’s. This was the early stages of having the illness where my weight appearance had blown up due to fluid build up (kidney disease) stretching the skin so much it tore the skin. I felt so conscious I covered any stretch marks up which were my arms & back of my leg’s for years. Even family friend’s would comment in joking way (didn’t find it funny) what you been eating why you look so big. Also stared at on the bus when I would be sitting in the disabled seat expected to get up because someone who looks physically ill perception is I shouldn’t be sitting there as well as the other commuters. Plus questioned why do i walk with a walking stick when I look fine (as if I would walk with a stuck if I didn’t need it😒) I really didn’t have the mindset/confidence I have now to challenge them on their comment. So I became withdrawn. But I’m lucky because I have such a great family support even thou they don’t always understand it was enough.
Even experiencing the affect of been on a hospital ward for long periods at a time. So seeing deaths & emotional family members near enough every other week. Drips, blood tests, doctors & of course the pain. Is often overlooked as factors that can have an effect on your mental state. Aside from the facial rash (butterfly rash). Because it’s viewed well your in hospital. Your better now & been discharged so it’s all well & good. So why you upset. Life still happens & any number of things can tip your mood. Not understanding someone’s anger or frustration can be the difference between someone needing to release it to someone who is needs someone to hear them. Be acknowledged.
But with these experiences it did open my eyes to how I undervalued the importance of mental health.
For me been in a coma was my turning point. In realising how connected my mental health was connected to my physical health. Especially dealing with my Lupus SLE, my life as a whole (circumstances) & how I looked at people. Of course I would never want anyone to experience what I went through to reach that point of realisation. But that flash of the life you could’ve had is real. It did light that fire of what can I do for myself as well as help those who maybe suffering in silence. Because pre coma there was that tendency to be accepted. I thought was not to say I’m not okay. I saw it as I’ll be judged as complaining etc.
Once I started to change my way of being. There was a realisation. All this goodness was aways there. I just expressed small part’s of it. It was learning through experiences to manage it & grow in confidence to own it. It was taking the outside world out if the equation. Focusing on myself (self-care). With resources that are readily available but making it tailor made to suit the needs of my mental health regardless of whatever is happening with my physical body & physical world. Learning to be vocal be it socially or at work without any feeling of inadequacy. Not been ashamed of saying I’m feeling down so politely turning down a meet up etc. Often people with Lupus SLE have the frustration of people feeling sorry for you. Which is frustrating because it’s patronising to feel sorry for a person who just because they have an illness you assume they don’t have a life that they are enjoying/loving besides been ill.
I have to say personally for me making life style changes including yoga & fitness not only helped with every factor of my life. But gave me confidence, improved my wellbeing & overall general health. My mood swings decreased. I’ve aways been positive but this time around it was that realistic positivity which was balanced with reality. It improved my self-esteem. I do suffer with insomnia. As Lupus SLE is very present. Yes I use knee braces, wrist braces, sometimes a walking stick as a professional yoga & fitness trainer. But I’m able to with confidence address anyone who has something to say about it. I politely enlighten them on the reasons why. Because I set myself in goals. Once those goals were met. There was maintenence. Becoming a Lupus advocate I was from the very beginning. But advocating self health, fitness & wellbeing for Lupus especially is such a passion. As you can’t control events outside of yourself. But the benefits you can control can have such a positive impact on how you can navigate your life for the better whilst managing your Lupus (SLE). When you make positive changes for yourself (awareness). It can extend to other’s. That’s how you change perceptions. Not by force but by understanding & awareness.