There has been a distinct lack of writing on my part these past couple of weeks, partly due to being a bit distracted, but mainly due to being extremely tired and having a bout of the flu. As someone who has a long term illness I catch colds easily, my immune system can be compromised, my body needs more nutrients than most and at times I lack the energy that most others take for granted. I am fortunate though. I have a loving, educated and supportive network of family and friends who know my illness and its symptoms, and just accept it as a part of me.
But what if you are not so lucky ?
I am a member of a community on line that helps others who suffer from a wide range of different illnesses by interacting on a forum. A common and predominant issue that comes up frequently is the lack of understanding and empathy sufferers receive, even from close loved ones. It is so sad to find that a person who is clearly in a lot of pain is shown hardly any sympathy or understanding and also offered no support. They are effectively being left to suffer in silence.
I mentioned one of my symptoms being ‘lethargy.’ For the informed loved one, they see how bad it can wipe me. They have seen me struggle to stay awake – fighting back the call of sleep, even after rising from a straight 10 hour slumber. They know how much I push myself to do even the simplest of household chores at times, but understand when it gets too much. They see me on my worst days, They see me on my best days. They see me fighting each and every day to maintain those better days for as long as I can. They know I need to take care of myself and allow me to do so without making me feel guilty or wrong by doing so. Without that support I know I would of struggled so much more and am shocked to the core when I hear others not receiving that help. Its a crucial part of the recovery and remission of any illness.
Prior to me being diagnosed, I was a career driven individual who would of juggled a family and a busy work schedule without even dropping a ball. Even now, I find it incredibly difficult to stop myself returning to default as I convince myself I can do it when I am having a better time. Its only after some well meaning advice from those who love me and my health physicians, that reality and experience beckon me to not be so hasty. If I take on too much, it can be the catalyst to another flare up and that is not fair on anyone.
This default behaviour stemmed from my upbringing. I was brought up on the premise that you get somewhere in life by working for it. From an early age I worked hard at most things, whether it was my school work or pocket money. The same ethos came as an adult with my working career. At the tender age of 19 I was an account manager for a respectable media company. I had a company car and all the perks to go with it and was well on my way to being rather comfortable in life. I had a large group of friends and a busy social life. All of this was turned on its head at 22 years of age, when my illness began. For many years I went into denial and felt that so long as I did x,y and z I would be fine and threw the diagnosis to the back of my mind, convincing myself I was ‘cured.’ I continued with my career ambitions and a whole host of other things to only later realise it was all in vain. This illness was the one thing that wasn’t going to get better if I worked harder and ignored it, in fact it would be the complete opposite, it aggravated it. Something my psyche could not get its head around.
Up to only quite recently, I carried a tremendous amount of guilt. Guilt that I have it. Guilt that I was not able to do the things I used to all the time. Guilt I wasn’t able to continue my career aspirations. Guilt that I had let my family down. Guilt that I wasn’t going to live the life others did. It was eating me up. I blamed myself constantly for so many things and never really stopped to realise that it was not my fault I got ill.
I also experienced a period of grief. I yearned for the ‘pre-diagnosed’ me, who had bundles of energy, who was sharp, remembered things, bright and with her whole life ahead of her. Now I had to walk side by side with this ‘thing’ I never asked for and it kept me angry and sad for many years.
One day, fortunately acceptance knocked at my door and it was the best stage to be at. It is this stage I am thankful for. Acceptance makes it easier to ensure my illness is kept at bay. I look after myself more. I set less expectations of myself. I don’t ‘beat myself up’ and I certainly don’t care what people think. It is at this stage my illness can be more successfully managed.
I am sure many others with an illness go through these stages at some point or another. I am sure anger, sadness is a process we all experience, more so than others. What is so sad though is to hear that other people suffering are not being supported, let alone being understood from those who profess to care about them. It saddens me to know that there are people sitting alone in their rooms, writing to the virtual stratosphere about their struggles because they have little or no support elsewhere from people they know. They probably beat themselves up every day for having an illness, compounded with the actual pain of it, the last thing they need is no one around who understands or cares! An illness can highlight how very fickle some people can be, even hidden amongst the closest of ‘family’ and ‘friends.’ I, fortunately have not been a victim of this for the most part, but its apparent there are plenty who are.
Friends of victims, whom they thought were their thickest of buddies, suddenly vanish into thin air. Family invitations cool off and excuses and avoidance become the norm. The illness is not only robbing them of their own capabilities as a person in work and life, it is also tearing apart the very foundations of their relationships. It feels like it is destroying everything around you.
Some may never see the fragility and superficiality of their friendships or the capacity of love in relationships, purely because they do not experience adversity to this degree. It may seem odd, but I see this as a blessing and feel for the ones who can’t find out who their truest loyal allies are. The ones who are on their side completely and are not there for personal gain or satisfaction. It is a blessing to know those who stand with you in all weathers and not just the sunshine.
Sometimes the avoidance or lack of contact can be be more of a personal thing, even from those who are deemed close. Some people are just scared of the unknown. I am not sure if they think they can catch the illness, or other reasons, but I think for the most part, they just don’t know what to say or do.
If you are a sufferer of any illness, invisible or not, then take heed, not everyone is avoiding you because they are cold hearted, cruel and arrogant. If they are, at least you found out the core character of them now, however disappointing. Usually though people may genuinely be scared of how to handle it and certainly don’t want to offend, distress or harm you in anyway. If you are experiencing this from some people, then understand that it may take them longer to deal with it than others.
The key is to not mourn for those you feel you have lost permanently, but to see it as an opportunity to have room in your life to be able to meet others who are more compassionate and understanding and those whom you can lend a supportive hand to when needed. The crucial part is not to take any rejection personally.
The main thing you can do is look after you. If someone has a negative, uneducated opinion of your illness or your symptoms then let it wash over your head. They do not realise how lucky they are to have the arrogance to not understand. It takes strength and endurance to battle it. Forgive those that don’t understand, for they know not what they do.
Take care of yourself. Have no time for the uncaring. Care and love the ones that do, for they will be there for a lifetime. Cherish them and when you can, do the same for them as they do for you 😉 xx Look forward to meeting new people. Your life will be all the richer for it.
with Warmth and Wishes