I am a 30+ year old woman, I live with my husband and 2 Children (child 1 and child 2). I have been ill for just over two years and I used to have a life before all this started. I have a chronic illness which has taken over my life (and those closest to me). I am in constant pain and have severe fatigue plus a whole load of nasty symptoms and side effects.. including being fat now(I did use to be skinny and I realise this is not a serious side effect but it is to me), I can’t wear shoes for long or tight clothes anymore (not because I’m fat), limited mobility and a load more actual serious things. I’m also really bad at spelling and grammar because of being ill so don’t be cruel (it’s actually not because I’m ill clearly)
Being chronically ill presents many difficulties and many battles. One difficult battle that I never expected to have is that of the battle of ignorance. I will admit that being ill may have made me more sensitive than usual (I definitely cry a bit too much), but I definitely often get the feeling that I’m being judged. There is a horrid stigma attached to being chronically ill,especially when it’s an “invisible illness” (I’m not a fan of that term. I have some nice visible symptoms thank you) I get this feeling off some people that they think this wouldn’t happen to them, that there is no way a vague illness would take over there lives, that they would fight harder and keep living. It’s like I’m inferior because I am not getting better.
Just some of the comments I’ve heard since being ill:
- “I would be chasing the Drs and knocking on doors to get results and find out what is going on” ha… like I love waiting around and not knowing what is going on or why my life is grounded to a halt. Anyone who has had to deal with the NHS everyday will tell similar tales to mine (as grateful as I am for our national health service) it can still be very difficult and it’s takes patience. Waiting lists are long, apart from paying for private appointments (which I’ve done at times) you are at the mercy of the NHS and their unfortunate cut backs.
- “I’d love to be off work. Your lucky you don’t have to worry about things like paperwork and deadlines or getting up at 6am” oh yes I just love sitting around day after day on my own , it Is not a party let me tell you. I’m not out having afternoon tea or sitting on the beach! It is depressing, it’s really hard. I am literally trapped in my house missing out on life. I spend hours sat in bed staring at walls counting down until it’s pain relief time. It is very isolating and isolation is not good for your mental health. It’s just another battle to add to my list and I’ve not even discussed the financial implications of it. Netflix is my best friend, it was even quite nice for a day or so but trust me it is just not fun. Id do anything to be back at work.
- “Yeah I am tired today too” now this one makes me want to scream. Yes everyone gets tired and I do remember PS(pre-sickness) tiredness but let me tell you there is a big difference between tiredness and fatigue. Until you have this crippling fatigue you will just not understand it. The best way to sum it up is “you just don’t know what tiredness is until you have had to lie down after a shower” (ha on the rare days I can even bear to stand up in the shower that is). It’s not that I’m trying to say my life is harder than yours or that don’t I want to hear about your problems it’s just a bit insensitive to compare your tiredness to my fatigue. Everyone gets tired I do know that and I’m not that self obsessed but a healthy persons tiredness is very different to a sick persons tiredness.
- “So and so has ………. and they still manage to have a life and go to work etc..so maybe you should talk to them about how to do it” urghhh, not every chronic illness is the same. Just because you have a certain condition doesn’t mean you are on the same level with everyone else with that condition. There are different levels of every conditions and every persons battle is different. I applaud those who manage to function day-to-day while unwell, it’s amazing but it doesn’t mean that you are braver or fighting harder it just means your condition is on a different level. Everyone is different, everyone’s story is unique.
- “You need to try….” I’ve received all sorts of opinions on things I should be trying, from a vegan diet to yoga to eating mud (I may have made that last one up). While I appreciate people who are generally trying to help, It can yet again feel like your being questioned or criticised. I am happy to hear from people I’m close to but I don’t care about your godmothers next door neighbour who cured themselves with yoga. I get you mean well but after this long just assume that I’ve tried everything.
- “You need to get out more” just see all the above points. I wish I could get out more.
- “What is up with you now?” This one is the one that I really can’t bear. It is ignorance pure and simple. Nothing is up with me now, it’s been up for the entire time I’ve been ill. Sometimes new symptoms appear or things get worse but it’s continuous and it’s painful. My best friend gets very wound up when people say this,(i appreciate the people on my team.)
Some people just don’t get chronic illness. Being chronically ill can be seen by some like your failing and people become impatient when things don’t improve. I’d get a lot more understanding and compassion if people could see my suffering. I’ve had family members and close friends act like this. Act like it wouldn’t happen to them but I learnt very quickly to accept that this how some people view it and they probably won’t change. Yet ive seen them be kind and compassionate to someone who has broken their leg or someone has the flu. These are the same people who become annoyed and inpatient with you when you can’t attend events such as christenings or even weddings (I can’t tell you how many important events I’ve missed). I wish they knew id give anything to be there and be part of things, and just to actually live again.
Not everyone is like that though, in fact some of my relationships have flourished during my illness, especially with those who have stepped up and become lifelines to me. Those who never question me or make me feel judged. The wonderful friend I met on an online support group, the neighbours who have done school runs for me, parents who have stepped in emotionally, financially and physically, my best friends who check on me every single day, those who have sent messages, cards, flowers,gifts just anything that has let me know I still matter, my children for still saying im a good Mum everyday, my husband for taking the in sickness and in health vows very seriously and holding down a full-time job whilst caring for me and the children(he is my hero!) (and he enjoys Netflix and chill luckily… the chill means what it says too, just chill). They just support me and hold my hand and listen to me cry, they don’t criticise me for not being there for them enough. I’m very grateful to those who have stayed in my life even though the parties on hold, it’s these people who I’m happy to answer questions for and delighted when they give me ideas and suggestions. When it’s coming from a positive place it’s always welcomed.
Want to do more to support someone who is chronically ill?
- Tell them you are thinking of them, even just a text or send a card. Just let them know you haven’t forgotten them and you are there for them. Just keep in touch. Don’t forget them because you don’t see them.
- Offer help: babysitting, shopping, housework,driving them around and the most helpful thing ever – cook them a meal(ill eat anything thanks )
- Don’t stop inviting them to things, this is hurtful and it’s not their fault they missed your last event .
- Give them a break. If they cancel on you last-minute or turn down invites, it’s because they have no choice. If they forget your birthday or other special dates don’t hold a grudge . The chances are they don’t even know what day it is or they haven’t been able to even get to a shop.
- If you want to buy a gift, buy something to help them. Hot water bottle,ice mask, books, magazines, ,bath bombs,pjs(I literally live in them), candles. Basically anything you can use in the home! You don’t need to buy gifts just let them know that you are there.
- Most importantly take the time to understand their condition, ask them about it,or those closest to them. You probably have no idea just how hard their lives are. I know I don’t share very much publicly. I avoid saying much on Facebook and I only talk about real housewives on Twitter (I have a lot of time on my hands) but I’m always open about my battle..
I’d like to think that even with everything that is going on I’m still me and I’m still trying to be a good wife,mum,daughter,sister,aunt, niece,cousin and friend. I’m not expecting for the world to revolve around me. All I can really ask for is consideration, love and patience.
If you are chronically ill and feel alone, there are some amazing support groups out there , have a look on Facebook – type your illness in the search box and see what comes up. My family has also had help from a few charities including A Spell for the unwell and the Young Carers Association.
Just to end with I don’t resent those who don’t understand it(I hardly do), I try to focus on the positives in my life. If you know someone is suffering but you don’t know what’s going on just ask, I bet you will be surprised how open they will be with you. This isn’t the life I chose and it’s not a life Id wish on anyone but it is my life and having people around who love and support me will make it bearable and make me keep going……