Sometimes one of the most difficult things about the experience of living with chronic pain can be feeling that your loved ones don’t understand. Even when loved ones mean well and want to be there for you, sometimes they simply can’t fully ‘get’ what you’re going through. This can leave you feeling isolated and alone, which unfortunately is a common feeling when you live with chronic pain.
Having to explain every symptom you’re experiencing and how you feel in every situation can be really draining and increasingly frustrating. Often it’s hard enough to fight fatigue to get through the day, never mind having to explain what you’re feeling. Sometimes talking about your symptoms can bring them to the front of your mind and make them harder to deal with. If you’re utilizing adaptive coping strategies and trying to distract from your pain, to think positively and to pace your activity so you can get things done, sometimes being reminded of your symptoms can actually worsen them!
Yet you know your loved ones want to be there for you and want to help. You understand that chronic pain can affect the whole family, not just you. So how do you deal with this situation? Throughout the years of living with chronic pain, I’ve developed a few ways to help my loved ones understand while also preventing me from having to go over things all the time.
1. Arrange an open conversation
Arranging a specific time to have an open conversation about your chronic pain can be really useful. You can allow your loved ones to ask all of their questions or voice their concerns, and take your time to answer them in a safe space, at a time that suits you. You can be clear that outside of this conversation, you’d prefer not to go over things too much as it can be unhelpful for you. This provides a clear time for your loved ones to get the reassurance and information they need, as well as allowing you to set a clear boundary for the benefit of your own health.
2. Send resources
It may be that your loved ones are trying to educate themselves about the disorder to help you, but aren’t sure where to turn, or perhaps aren’t reading accurate resources. Picking out some great resources which you feel reflect your condition accurately and sending the links, leaflets or books, can be a great way to allow them to educate themselves about what you’re going through.
3. Write down how you feel
We’re not all great at talking about our feelings face to face. Sometimes an in depth, in person conversation can be much more draining emotionally and even physically. It can even lead to being flustered and not remembering what you wanted to say, particularly if the loved ones you’re trying to communicate with are not as understanding as you might like them to be. Writing down how you feel and specific points you want to get across can be a great way to ensure you’re expressing exactly what you want to. You could send your loved ones a letter, an email, or even a text.
An extra bonus to writing things down is that your loved ones have a reference point to refer back to whenever they need to, giving them an ongoing clear understanding and reducing the chance you will need to go over things again.
4. Use relatable examples
If you don’t live with chronic pain, even if you’re trying really hard, it’s not possible to understand exactly how it feels. Something I’ve found really useful is using examples that my loved ones can relate to in their own lives.
For example when I’m referencing fatigue, I describe it to them as that feeling at the end of the night when you’ve had a busy day, you’re exhausted, your eyes are closing as you sit on the sofa and you know you absolutely have to go to bed because you can’t stay awake any longer. I then explain that on bad days, that’s the feeling I wake up with, and I only get more fatigued from there.
Another example is how I explain the ‘fibro fog’ (cognitive issues) which comes with fibromyalgia. I describe that feeling when you walk into a room and forget why you went there in the first place, or when you have a word on the tip of your tongue but can’t quite reach it, but amplified. I use these examples to help them understand somewhat how the experience feels.
5. Ask them to write down questions and concerns
If your loved ones have lots of questions and concerns, it can be a good idea to ask them to write them down. That way you can address each concern one at a time when you feel up to it, allowing you to deal with things at a pace that suits you.
Your mental and physical health come first
Fundamentally it’s vital to remember that your mental health and your physical wellbeing come first. There’s no requirement which says you have to help your loved ones understand. They are responsible for their own self-education and understanding. For me, it helps me to feel less alone and enables those I love to know better how to help me. However if you feel that explaining what you’re going through isn’t useful for you, you’re under no obligation to do so.
Remember that if your loved ones are not willing to understand or are acting in a way that is detrimental to your health, you have a right to set clear boundaries or distance yourself from negative influences. Even if your loved ones have the best of intentions, setting boundaries can be beneficial for your own wellbeing and doesn’t mean you love them any less. Never be afraid to do what is best for you.