How to Deal with Chronic Pain and Illness
My Experience and Advice Dealing with Chronic Pain
Becoming chronically ill and/or finding yourself in chronic pain is scary and opens up many questions that you pray someone, anyone can answer for you. I'm not a doctor so my views and tips here are from a personal experience view and ones that I wish I had seen when I was first diagnosed. I have been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Hypermobility, Degenerative Disc Disease, Disc bulges and tears and Arthritic knees and as there is no cure for the Fibro, DDD or CFS life has changed dramatically—these tips and thoughts have helped me and others I have spoken to through support groups and may help others.
- Check with your doctor as much as you feel you need to rather than researching your own symptoms. It's natural to turn to Google to check what is wrong with you when experiencing pain or illness; however your findings will often tell you the worse case scenarios which can cause extra stress and exacerbate your symptoms. See your doctor/nurse/specialist and once you have a diagnosis then research your condition so you fully understand it and can help those around you understand it better too.
- Keep a diary of your symptoms. It's a really good idea to keep a diary of how you are feeling each day and at different times of the day to look for trends in your symptoms. For example you may feel worse in the morning or after meals, better after a walk or worse after a shower, and so on. Also, it helps to keep track of triggers—things that make you feel worse or in more pain or if a new symptom appears as you may not remember everything when you see the doctor.
- Doctors are not magicians. Try to remember doctors are human too; they may not have all the answers and may not get it right 1st time. We all too often go to the doctor's office and hope for a miracle, but they often have to work through a process of elimination and won't know everything; that's why a diary can often help them. Once you have a diagnosis, your own research and life experience will probably make you more of an expert than the doctor in that particular area; if you are lucky you will have a doctor who will listen and work with you.
- Don't doubt yourself. You will probably feel like you're going mad more than once and wonder if it is all real or in your head. With some illnesses (especially ones like CFS and Fibro) it has taken years for them to be acknowledged as real illnesses and 'not in the head' of patients. You may still come across opinions like this occasionally. Don't be put off or doubt yourself; find a healthcare provider who supports, believes and understands you, then offer yourself the same understanding.
- Learn to say no. It's OK to say no to people sometimes if you are feeling ill, and it is OK to say no without feeling guilty about it. You are battling your body everyday and sometimes that is all you can manage for that day.
- Remember your illness affects your loved ones, too. It is scary and painful and unfair to have the condition(s) you have, but remember your loved ones will suffer as well. They have to see someone they love in pain and upset while they are unable to do anything to lessen it or make it better, which can be frustrating for them. As much as you may feel your life has changed, so has your relationship with them and the things you used to do together. This is no-ones fault but is something that needs to be talked about. Communication is the key here. Talk about how you are feeling; if it's a bad day let them know; if you are scared or in pain then vocalise it and also listen to your loved ones concerns and find compromises that can help. Just as you will need comfort at times so will they—remember you are a team.
- Be honest with others. Being ill is nothing to be ashamed of. Be honest with others about your conditions, tell your friends what is wrong and how it affects you so they are aware you aren't ignoring them or cancelling plans for no reason. You may find you lose some friends and that will hurt but you will also find you will be left with true friends who will support and understand you once you have explained it to them.
- Join support groups. Find support groups either locally to where you live or online. Those around you may sympathise with you but they cannot empathise if they have not experienced your conditions. Support groups can offer advice, treatments that have worked for them, and understanding from a lived experience view. Sometimes you'll find you don't want to keep 'moaning' to family and support forums can be an outlet for this.
- Because your life may change does not mean it's over. One of the scariest and most frustrating things about chronic pain/illnesses are the inevitable changes in your life. You may find you can't go out with your friends partying at weekends anymore. You can't work full-time or maybe at all. Things you took for granted are not possible since you became ill. Those long walks you enjoyed are too painful. Cleaning the house is too exhausting or painful—even taking a bath is difficult. Whatever it is, one day you may find the old you is gone and you feel lost. This is where depression can become a reality and an awareness is needed. With long-term illness and chronic pain, things will change, but it does not necessarily equate to your life being over. Sometimes it just means a change of direction is needed. For example, I found I could not teach anymore as being on my feet all day and thinking 'on my feet' was more and more difficult. This meant my career was over—what was I to do? I didn't want to waste my psychology degree, so I retrained as a counsellor and now work from home where I choose my hours and can rest as needed. Days out are still possible but need planning for rests and mobility issues, etc. Life is not over; it's just beginning again in a different direction. It's an adventure!
I hope this helps even one person; remember you are not alone. If you are a sufferer, be kind to yourself, do what you can, rest when needed, and never be afraid to ask for help. If you know someone who is suffering, accept you cannot change their conditions but believing them, listening and supporting them helps more than you realise. :)