After months or even years of searching for an answer, receiving a diagnosis can bring with it an initial sense of relief. It is reassuring to finally understand why you have been feeling so terrible and to know that it is not all in your head as some doctors may have suggested.
A New Diagnosis is Just The Start
However, a diagnosis is not the conclusion to your story with chronic illness. In fact, a diagnosis signifies the start of a new journey.
Although I was initially relieved to receive a diagnosis of Fibromyalgia, what followed was months, if not years, of learning to accept it. What I did not appreciate in those early days was the fact that, to live well with this illness, you must adapt.
I naively thought that I would be able to overcome fibromyalgia and continue with my life as though nothing had happened. Looking back, I can now see that I was simply in denial, which coincidentally is the very first stage in the road to acceptance; a road with a multitude of bumps and unexpected turns along the way.
Acceptance is an ongoing Journey
I would say that acceptance is very much an ongoing journey, rather than a destination. However, I have learned many things along the way that have helped me to feel more accepting of my illness and the limitations it places upon me.
Here are 5 important lessons I have learned living with chronic illness:
1. The Importance Of Forgiving Myself
As I mentioned above, I tried to continue with my life as though nothing was wrong with me in those early days after I first received my diagnosis.
This turned out to be an unhealthy mentality and for a long time, I held a lot of resentment, frustration and anger towards myself. All because I struggled to do certain tasks, with some even becoming downright impossible for me to achieve.
However, the longer I lived with chronic illness the more I began to understand the impact it had on my life. I rationalized that I did not want to continue my life with this feeling of resentment towards myself.
I had no choice over having this illness but I did have a choice regarding how I handled it.
I could either live my life with chronic illness and continue to be resentful, or I could make the most out of a bad situation and try to be as positive as possible.
It took me quite a long time but I began to learn the importance of forgiveness. I have realised that it is neither my fault nor is it my choice to live with the limitations chronic illness places upon me.
Giving myself a hard time over them is incredibly unfair. I have, therefore, learned to be more forgiving of myself.
A positive from this is that I have been able to let go of the guilt and resentment I was holding onto and I, therefore, feel much happier in myself.
2. Accepting Help Is Not A Failure
Allowing other people to help and assist me was something I really struggled with in the initial stages of my illness. It felt like pieces of my independence were being taken from me and I resisted it for as long as I could.
I would struggle on and try to be superwoman but, unfortunately, I am not blessed with superhero powers; I’m a woman with a chronic illness and I need help.
What I have since learned is that others helping me does not make me a failure in any way, shape or form. It makes me sensible.
Unfortunately, I do not have boundless amounts of energy and each day I only have a limited amount of energy to get me through. To get by and to enable me to do some of the things I enjoy, I simply cannot do it all.
I need help with many things, such as cooking and cleaning. When I can repay a favour I do and I feel good about that.
I have realised that people help me because they genuinely want to and because they feel good about doing so. My life is much better now that I accept help as I am no longer constantly exhausted or in excruciating pain from overdoing things.
3. You May Lose Friendships But The People Who Love You Stay Around
Chronic illness can be very isolating at times and I am known to become a bit of a hermit when I am suffering from a flare. Like many, I am no longer able to attend every social event.
I have spoken to people who have lost friendships as a result of their illness and I have admittedly lost contact with some people too.
Although friendship has to be a two-way street, there needs to be a level of understanding towards chronic illness and an appreciation that we may not be well enough to do everything we would like to.
Without this appreciation, a friendship can become toxic. Saying no is not always because we don’t want to do something, it is often because we simply can’t.
So long as we are open about our struggles, our friends need to be understanding of this.
I used to put up walls and try to keep my illness as hidden as possible. The reason I did this was because I didn’t want people to think of me any differently.
I did not want sympathy and I didn’t want people to see my illness before they saw me.
However, I have realised the more open I am, the bigger my support network becomes. I have learned to cut ties with people who cannot accept the limitations of my illness and instead focus my energy on the people that do.
Fortunately, the people who genuinely care and love you are the ones who are always there for you and do not judge.
4. Your Self-Worth And Identity Is Not Defined By Work
One of the biggest struggles I have faced over recent months has been my inability to work. My job, which is demanding work, has unfortunately been beyond my current level of fitness.
The fear of being unable to return to this line of work is very much at the forefront of my mind. Admittedly, the thought of giving up work due to chronic illness is daunting.
I previously worried that having to give up work would leave me feeling as though I had lost a part of my identity and self-worth. This, of course, is not helped by social pressures.
However, I have come to realise that a job is only a part of my life, not a part of who I am. I am a loving wife, caring daughter, photographer, writer and I am quite crafty to boot!
I am so much more than a job and have a lot to offer out with work. My self-worth and identity are not defined by a job.
I, therefore, will not allow anyone to make me feel as though I am less of a person due to my inability to work.
5. Life Doesn’t Always Go As Planned But That’s Okay
As humans, it is in our nature to plan ahead and imagine what our life will look like. We are encouraged from an early age to think about what we want to do in the future.
I think I can speak for everyone when I say that chronic illness never featured in that life plan!
For a few fortunate people, illness may be a short bump in the road but for many, it will change the journey completely. This isn’t necessarily a negative thing, even though it may seem like it at the time.
I do believe that everything works out in the end; I have to, it’s what keeps me going. However, I have realised that the end result may be vastly different to what I imagined for myself, though I am learning that that’s okay.
I no longer know what is around the corner for me. However, since falling ill I’ve discovered new passions, with writing being just one, and I’m excited to find out where life takes me.
More Blog Posts Like This:
- 5 things I wish people knew about Fibromyalgia and ME/CFS
- 5 mistakes I have made in my recovery from Fibromyalgia & CFS
- Are you trying too hard to get better?
What would be on your list? Let me know what you have learned through living with chronic illness in the comments below.
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(This post, written by me, was first published on ProHealth.com [22.04.15])
I love this! I needed to read this today, I’m having a ‘meh’ day so it’s made me a bit more positive 🙂 thank you.
Sarah x
sarahinwonderland.co.uk
Hi Sarah, sorry to hear you are having a bad day and I’m glad this post helped to pick you up a bit. I hope tomorrow is a better day for you 🙂 x
I too love this post. I’m still in the ‘angry at myself for being ill & overwhelming guilt’ stage….but I’m working on it !! Your post said exactly what I’ve been trying to ‘work’ on. Thank you for your honesty & making me realise that I’m still me & that’s ok.
Thank you, I am glad you enjoyed the post and found it helpful. I think acceptance is constant work and there are so many emotions involved when you are living with chronic illness. But our illness does not define us. Like you say, you are still you 🙂 plus you are now probably more caring, empathetic and resilient to boot!
This is a very inspiring post. I have learned that I need to be flexible and patient. Being able to accept things and find another way has helped me through the years. 🙂
Thank you Betsy, I am glad you found the post inspiring. Patience is key isn’t it? Society has evolved to be very much ‘now, now, now’ when we need to slow down and take things at a difference pace 🙂 It has taken me time to learn that.
The second one about accepting help was the hardest for me during my healing. Even though I have learned to ask for help and not feel guilty, there are times that I get upset that I need help at times.
Thank you for sharing your encouragement and help with others!
Yes, accepting help is difficult sometimes and I think it is hard because it feels as though you are giving up a bit of your independence. It is a lot easier now but, like you, I still have moments when I feel guilty or like I am being a burden and I need to remind myself that neither are the case. Thank you Brandi.
Thanks for this! One of my biggest problems is the guilt and embarrassment I feel when people ask what I do for a living. Most days I struggle to get out of bed, cooking for myself isn’t even an option and leaving the house is extremely difficult. I avoid social situations and new people because that one question, which I always know is coming, fills me with dread. Its easy to see the judgement on peoples faces when they make assumptions about people who cant work. Its extremely frustrating & hard to accept, but I know that sometimes, they are just not the kind of people I should be around.
It’s really hard when society defines us by what we do. When you lose that aspect of yourself it’s so easy to feel like you say. But we have to realise we are more than that. The fact that you manage to do all that you do despite your struggles is amazing. And sure, you might think “it’s not much” but believe me when I say it is. I have so much respect for anyone who gets through each day living with this horrible illness. Surround yourself with the people who lift you up and empower you, don’t concern yourself with anyone who brings you down. Nod and let their words and looks wash right over you. You are more than enough.
Wow Donna, you nailed it! I have had to deal with all 5 of these things. At times, I still deal with them. When I first left my career I felt like I had lost my identity. It’s taken some time to look at myself as more than a job title. I also relate with #3. There have been relationships that fall away. But the ones that have remained are an invaluable sense of encouragement to me!
It’s definitely a difficult transition– moving away from defining ourselves by a job. I’m glad you can relate and I agree with what you say, the people who are most important are those that provide their unfaltering support.
Thank you so much for being so honest an open about how things have had to change in your life, it has really helped me , I am struggling with coming to turms with my Chronic illness , even though I have had it for a number of years . At the moment it is particularly bad and I feel guilty for the things I can’t do , for letting people down and I put a lot of pressure on myself to do things I just can’t do. Having to give up my job was one if the worse things and slit of people judge you if you don’t work , they don’t care that you worked all your life or that you loved your job and it broke your heart having to give it up , they just see you as being lazy.
I am so great full to you for putting things into prospective for me . It’s easy to try to believe these things your self but much easier when they are written in front of you. So a massive thank you for making me feel a little better about myself . Thank you I hope that you are having more good days than bad 🙂
Hi Kerry, thank you for your lovely comment. I can empathise with all that you say. Giving up work has been the hardest for me to come to terms with and it was definitely a grieving process I had to go through. Like you so rightfully say, it is heartbreaking letting that part of yourself go. Having this blog helps as it gives me a focus and makes me feel productive. I take the view that something else is meant for me and I hold onto that hope. I also take the viewpoint that giving up things now and focussing on me will put me in a better place to do more in the future. Again, it’s hope that is the driving force behind that too. It is frustrating when people can’t understand the difficulties and that we go through and when they don’t realise the decisions we make often aren’t out of choice. I wouldn’t wish this on anyone but I have learned a lot from being ill and my focus and priorities have totally changed. Guilt is a difficult one. You might enjoy reading this post about letting go of guilt, that I wrote a while back 🙂
Another great post, Donna, I find that I still manage to be a planner by having a selection of well day and lousy day activities. So even if it is watching an episode from a box set or looking through a magazine on a bad day, I still get the thrill of ticking something off a list. Being defined by work is a big one, isn’t it.? I guess I treat my blog as a job even though it doesn’t bring any form of income yet, never mind a salary. To be honest, even if it is working through all the levels of a game I approach so many areas of my life as if it was work, I think it is just something in my make up, or maybe it is to do with me being a bit of a productivity geek.
Hey, Susan! Thank you. Yes, that’s such a good point. I do the same in my bullet journal. Ticking things off makes me feel so productive, even when it is something simple. I’ve always done the same with my blog. It’s helped to give me a sense of purpose 🙂
I too suffer from chronic illness and enjoyed you article very much. As a matter of fact I really needed it today. I am struggling with the fact that ME will never be the same as I was before the chronic illness. I was very active and exercised all the time and was very social. I never thought this could happen to me. Thank you for posting this article.
Hi Lynn, apologies for the very late reply as I stepped away from my blog for a few months. I am happy to hear that you enjoyed my post. I can relate to your comment. Though I have been fortunate to improve significantly since I first wrote this post, my life remains different to how it was before I got sick and those feelings can still emerge. Sending you a big hug.