Most people who have been diagnosed with a chronic illness will have more than likely been suffering for months, if not years, with various symptoms. Some people may not yet have a diagnosis for numerous reasons. A lot of chronic illnesses; such as fibromyalgia, lupus, multiple sclerosis and Lyme disease share a wide range of symptoms. There isn’t always a difinitive test for certain illnesses so the specialists will make a diagnosis based on medical history and symptoms.
Having a chronic illness means that the doctors visits and tests don’t end at diagnosis. You will most likely have new symptoms popping up every now and then or a worsening of symptoms which will cause the need for check ups and more tests. Chances are, you will give blood more often than you poop, you will be poked and prodded all over and you will be scanned more often than baggage at the airport. It becomes the norm after a while but it doesn’t mean it’s easier. Adjusting to life with illness is very difficult and affects people in different ways. I’ve decided to write a few things I’ve learned since becoming ill in the hope that it may ease the journey for a fellow sufferer.
1. Things are going to change and you have to go with it as best you can.
Your daily routine will probably change forever. Instead of getting up in the morning, having a shower, doing your hair and makeup, getting dressed, making your lunch and heading to work; you will have to add in taking your medication, dealing with fatigue and pain and possibly skipping a few steps so you have enough energy to make it through the day. The changes might be small at first but can become life altering. Most changes are necessary to keep yourself as healthy as possible. You realise what’s more important in life and save your energy for those things. Suddenly, having perfect hair and makeup doesn’t seem like such a priority but it’s ok.
2. Realise you are not your illness.
Illness is a part of your life, a big part, but you are still you, just with a different body than before. People with invisible illness can often be judged by others because they don’t appear sick. I say f*ck them! They have no idea what you deal with on a daily basis. They see a tiny glimpse of you smiling on one of your better days and are therefore convinced they have uncovered a fraud! We still have lives and we deserve to live them to the fullest. If I want to do a “normal” person activity like go to the cinema then I will go to the cinema because I’m entitled to have a life as much as anybody else. The difference is that there were probably a lot of tears, strong medication, panic attacks and rescheduling because I wasn’t well enough to go the last 3 times before I actually got to the cinema. I can still laugh, I can still enjoy being in the company of my friends, I can still listen to music and watch films, I can still go on days out with my family and be myself, I’m just a lot more limited now. Don’t change who you are because of people’s perceptions of how you “should” be if you are as ill as you say. Always be you.
3. Be jealous but not angry.
Healthy people will often make you green with envy. I constantly get jealous of people I see running because I will probably never run again. I also get jealous of people who are doing really well at work, people who have hectic lives and people who go out drinking and dancing every weekend. That used to be me and I miss that, of course I’m jealous. However, I’m not angry. I’ve finally accepted that this is my life now and it’s not anybody else’s fault that I am this way. I turn my jealousy into motivation to keep going and not “give in” to my illness. To be hateful would be denying my illness and going in the opposite direction to recovery. Jealousy can be healthy, anger can be hurtful to yourself and others.
4. Use your experience for good.
Having such a dramatic change in your life can actually help you become a better person. I no longer stress about the insignificant things. I need to be wise about how I use my limited energy so I’m constantly prioritising. I spend my better days with family and friends making memories that get me through the tough days. I write this blog hoping that I can pass on my experience and maybe help others through difficult situations. I will raise awareness of my illnesses and help others do the same. I give my advice to fellow sufferers on Facebook groups and in return, they help me. Obviously, I have my off days where I will wallow in self pity but it never lasts and I’m back to being my happy self again in no time. I have always believed that everything happens for a reason and that maybe I’m ill because I needed to reassess my priorities in life and to help other people. Seeing the positives and using my experience for good has helped me get through some very tough times and I encourage others to do the same.
5. Find your “spoonie” family.
If you are unsure what a “spoonie” is, have a quick Google of ‘The Spoon Theory’ and it will explain everything. What I mean by finding your family is finding people going through the same or very similar situations to yourself. I have many friends from all over the world who I met through Facebook and we all have chronic illness in common. I turn to these people when I need help from others who understand completely. I’ve never met them but we are always there for each other. I encourage you to find groups for people with your illness and get to know them. You will immediately feel less alone in this world and it’s an amazing feeling knowing there are others who can completely sympathise with everything you’re going through. If you are very lucky, you may find some people live close to you and you can meet up when you are well enough. I’m so grateful for the friends I have both online and living close by for all of their support from the very beginning. I’ve found that those who are living through it have more knowledge and understanding than many doctors! Obviously always see your doctor before trying medications and treatments but you might just come across something that your doctor hasn’t thought of trying yet!
I hope this post was somewhat helpful to you. It’s a constant learning curve for everyone suffering chronic illness and if you have any tips to add, let me know in the comments.