This question is heartbreaking, and I know for many people, it sparks SO many different emotions which are often, understandably, negative. When I asked this question in our Online Community, the main responses were: embarrassed, angry and let down.
We feel embarrassment because we don’t want people seeing us as weak or thinking that we are lazy, crying out for attention or faking an illness. We want to be seen and remembered as the strong, fit people we used to be. We feel like a shell of the person we once were. This can lead to isolation and loneliness. We don’t go out and socialise much, mainly because of our poor health but also because we don’t want to have to answer the uncomfortable questions about WHY we aren’t feeling well. We tend to run from conversations like those.
Then we feel angry. Rightly so, we didn’t ask for this. Not at all. We feel we have given so much up, lost so much and had to feel so much pain. We didn’t inflict this on ourselves; this was all out of our control. We wonder what we ever did to the world to deserve this. It is a natural reaction but one we shouldn’t allow ourselves to dwell on. It opens the door to a gloomy and dark hole. We must try to channel our negative emotions in a positive way. Be creative and practise mindfulness, cry and let the emotions out, replacing them with positive emotions and feelings. Again, this is often so difficult to do when all you want to do it kick, scream and cry.
Then there are the feelings of feeling like a let-down and a drain on people. You are fully aware of the huge medical bills and the high cost of treatment. People are often so caring and give you so much support yet the guilt eats away inside of us because we feel we don’t give anything back and this can be unbearable to handle. All we want to do is give back but often our health gets in the way of that. We share our gratitude but sometimes it feels like words aren’t enough. Many of us are used to coping with demanding careers, being in loving relationships, running a busy schedule, having many amazing dreams and aspirations and often we are reduced to barely being able to function. People wonder what has happened to you and their questioning can also lead you to expect more from yourself. When these expectations aren’t met, we begin to believe we haven’t just let ourselves down but everyone else around us.
Surrounding ourselves with loved ones, getting out and about a little more, taking part in our hobbies or finding new ones can do our mental health the world of good. A positive mindset is KEY for conquering anything. Life is too short to keep feeding and entertaining the negatives. There are so many positives you can seek out when you go searching. Our chronic illness should make us feel empowered, strong and warrior-like. WHY?
Why not? We have a right to feel these emotions because they are true. We fight horrendous symptoms EVERY DAY, we battle hard every day and we are still here. We are still living life, breathing and not giving up and that is something to be extremely proud of and worth remembering. We may not work a 9-5 job or go out socialising til 2am but not many people could tolerate the pain you are suffering and have the determination to not give up.
Here are a few responses from members of our Online Community, sharing how their illness makes them feel:
‘I feel anger, frustration, disbelief, sadness, grief.’
‘Anger and frustration at those who didn’t diagnose me til I sent to bloods away to Germany. Anger at the disbelievers including family, friends and medical professionals in New Zealand.’
‘Grief, loss and sadness for all that I’ve lost to it including the ability to have children as I was medically advised to have a hysterectomy. Illness has ruined my marriage, all my perfect teeth (I now have dentures), my career, sight, love of the foods I used to have, all my favourite sports and hobbies. I mourn and grieve for the person I used to be.’
‘I cannot think of any positives of this illness apart from the fact that I recognised symptoms of Lyme in my husband. He had a positive blood test and was treated thus avoiding all sorts of further unnecessary tests and treatment for illnesses he did not have. The treatment for Lyme was unsuccessful. Like me he now has chronic Lyme which is not supported by the NHS.’
‘I feel anxiety and worry as I go through chronic late stage Lyme disease as I have no idea when it will finally take me.’
‘Almost every negative feeling. Loss of productive life is a big one for me. Although other people tell me I have achieved a lot in my life, I know I could have done so much more if I had not struggled with Lyme disease for all of my adult life. Misunderstood for almost all my life by all around me.’
Seeing our struggle and pain as having a purpose is also a must. We are going through this struggle so we can keep gaining strength, connecting with new people, exploring new hobbies and career paths and blossoming as people. When you give something a purpose, automatically you see everything in a more positive light. Try it! I doubt that you will be disappointed. Sometimes we must keep hope in our hearts. It isn’t always easy finding the positives when we are so used to focusing on the negatives but once you start it really does have a domino effect. Also, when you begin voicing the positivity to people who ask about your illness, they too see you as the warrior you truly are and gain inspiration from your strength rather than seeing you as someone who isn’t coping.
I hope after you read this piece you will talk to yourself differently. You will begin to highlight the positives and see a shift in your mental strength. Sometimes we all need a little push in the right directions and a few tools to really get the ball rolling as often we are stuck in a dark hole, wondering where to begin to dig ourselves out and if we even have the energy. Investing in your mindset is key. Remember life is short. Add colour!
You are a warrior!