I am fortunate in my adult life to have a lot of people in it who understand my pain. In a way, that is because I have little tolerance for people who do not. And cultivated friends who do. As we grow older we tend to not have much tolerance from people that do not believe our pain and make us feel like we must in some way prove its existence. Or make us feel guilty that we are ill. We certainly have no reason to validate our experiences. Belief in them or not in them, doesn’t make them go away.
The older I get the more I realize I have to focus on the things I need to do to maintain my well-being. All the things I do that manage my pain and illnesses. That is what is important. Not the opinions of others. What matters is my quality of life. My ability to function in the world. And improving that day by day to live a live I want to live.
Yes, people will judge you. Stigma will arise, as it always does. It is everywhere and I have encountered it personally more than a few times in various ways. We all have to deal with that. It is unavoidable. It stems from ignorance, to discrimination to judgements based on stereotypes. We can choose the people we want in our lives but we cannot choose the people that come into our lives for various reasons; insurance company people, co-workers, employers, family in many cases can be an issue for some people and medical professionals. So we all have to deal with stigma and discrimination in the situations where we do not choose the people around us or have no choice in those people.
Sometimes we can choose what to disclose. As in, we do not need to tell co-workers aspects of our health. That we can choose to keep quiet, but eventually it does seem to come out.
Dealing with stigma can be difficult. It is often a bit of a shock. It was for me certainly. In certain situations you do not expect certain people to behave in the way that they do and when they Do, you are uncertain what to do about it. Often, they have more power in that context. We have to understand that this isn’t acceptable behaviour. And there is always someone to report this behaviour to. I regret now that I am older, and wiser, and certainly more aware than when I was younger, that I never did what I should have in those contexts. Intimidation works well sometimes when you fear what will happen to you.
The lessons I have learned are:
- Make yourself a priority: You have to make your chronic illness or chronic pain a priority. If you find a way to cope and manage it, quality of life is established, along with some functionality and then other things fall into place. You ignore it? And other things will fall apart. I admit a lot of it is trial and error, trial and error, but make it a priority to progress. To find some forward momentum in any way possible. Every little bit counts. Until the little things add up and you have actually made progress. Pushing through the pain, though, is ignoring pain management and in the end, you will crash and burn. From experience, I ardently suggest avoiding that method.
- Stand up for yourself: Like I said you will encounter discriminations and stigma and you have the right to stand up for yourself. I know when I was younger I didn’t and I must say it got pretty brutal and tanked my self worth. I believe the migraines got worse due to all the stress; the ultimatums, threats, and so forth. I would never tolerate such treatment again. It sickens me to think people could treat someone like that. Remember there is Always someone to report these things to. Always.
- Keep good company: We can’t choose family (love mind to death and back) but we can choose friends. And we shouldn’t choose friends that judge us, criticize us or make us feel guilty for being ill or canceling a plan. It is difficult to live with chronic illnesses. Draining and we have to be careful to conserve energy, pace and moderate. People that do not understand our limitations can make us feel pretty horrible about ourselves. Make us feel we should be more than we are, but we are who we are. And we have to live the lives we have. Cultivating good friendships that are mutually empowering are important.
- You are who you are: Not who you could be. Not who you were. You are who you are currently in the present. This is the way it is. We have to accept that and live the best life we can with the limitations we have. We are still capable of having a life and doing things, it just has to be paced. And, really, this is something Others could learn from Us that would improve their lives. But you are not stagnant. Accept chronic illness is a part of your life, but understand progress in the direction of better wellbeing and quality of life is always possible. That brings us back to point 1.
- Overall wellbeing is important: While we look after our physical selves we must also look after our mental and emotional wellbeing. For one, mental health is equally important. And should be treated as well since it complicates our other conditions. For another, general mental and emotional health should always be considered. We can feel isolated, frustrated, sad, angry, guilty… and so much more because of our poor health. We should do things help our overall wellbeing. Like nurturing our sense of self with hobbies. Like socializing to decrease isolation and boost mood. Like exercising to boost mood, score more points if it gets out outside. Like doing things that you know make you happy for the sake of doing them. This sense that every minute of the day must be productive or we feel guilty about being sick is fundamentally skewed. Everyone should have fulfilling lives and we are No different. And fulfilling lives helps with our overall wellbeing. We all need balance in our lives.