For a long time now, I have lived with a chronic and invisible illness called Meniere’s disease.
At this point, I have learned to live with it and on most days, I’m able to manage my symptoms surprisingly well. But there is no cure for my condition; it’s always there, lurking in the shadows, waiting to strike.
And when it does, it can be hard for those closest to me to understand what I’m going through. They try to support me, but despite their best efforts, it’s easy to end up feeling worse. I know it’s not intentional, but the guilt and shame I experience in these moments feels the same.
When you don’t look sick, it can be hard for people to have empathy or even wrap their minds around your situation. But the pain is real. And no one wants to be sick.
We want the same things as everyone else. We want to live life on our own terms. We want to find love and be loved and accepted. We want to be happy. We have dreams and aspirations. But we also have to live with the unfortunate reality of unwanted limitations.
If someone you care about has a chronic or invisible illness, there is a right way and a wrong way to help them. They need you more than ever, but in ways you probably didn’t expect.
The five caregiver commandments:
1. Accept your powerlessness.
Watching a loved one in pain is one of the hardest things in the world. It can feel like being trapped in a nightmare. You want to make them to feel better, but you just can’t.
There are many ways to support your loved one, but you need to understand that you are powerless to make them better. It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make difference for them.
Your love and understanding is the medicine they need.
2. Take time to learn about their illness.
The first step towards understanding is taking the time to learn about their illness. At the very least, learn the basics. What are the symptoms? What are the treatments? It can be helpful to read the experiences of others.
You won’t be able to make them better, but it’s an empowering step. Having an intellectual understanding goes a long way towards providing effective care. It opens the door to empathy.
Talk to your loved one. Ask them about their experience. Ask them questions if you don’t understand, don’t just guess. It may be hard for them to articulate the answers, but be patient. Really try to understand. Try to put yourself in their shoes.
What might your life look like if the same limitations were suddenly placed on you?
The better you can understand their illness, the better off you’ll be. The love and support you give will be authentic in their eyes.
I also recommend reading “The Spoon Theory” by Christine Miserandino at butyoudontlooksick.com. It’s a fantastic article and the most elegant description of what it’s like to live with a chronic illness I have ever come across.
3. Be with them, but give them space when they need it.
One of the best ways to support someone with a chronic illness is to just simply be with them.
Living with a chronic illness can be incredibly lonely. It’s easy to feel disconnected from the world when you are so severely limited. It can be hard to relate to everyone else.
One of the things your loved one needs from you the most is companionship. Never underestimate the power of spending quality time with someone you care about when they are in pain.
Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through.
But the reverse is also true. There will be times when the best thing you can do is to give your loved one space. Getting enough sleep and rest is a critical part of managing a chronic illness. There will be times when your loved one needs you, but there will also be times when they need to be alone.
If they don’t have the energy to spend time with you, never hold it against them. It’s not a reflection of some hidden resentment they harbor. In fact, it’s not personal at all. No one would rather stay home in bed. But when you have a chronic illness, you’re forced to make hard choices, and it’s so much harder when you feel like you’ve let someone down that you care about.
By giving them space, and not taking it personally, you are supporting them more than you can possibly know.
4. Validate their pain.
At the end of the day, what most people with a chronic illness so desperately seek is to be heard, to be understood, to be accepted, but above all else, to be validated.
Your loved one lives in a reality where almost no one truly understands what they’re going through. When they’re in pain, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them you know their pain is real.
By far, this is the most powerful way you can give your love and support. When they feel neglected by the world, a compassionate validation can give them the strength they need to persevere. In that moment, it can change everything for them.
5. Don’t get frustrated.
The worst part of a chronic illness is usually not the illness. Everyone gets sick from time to time. It’s the never ending repetitive nature that makes it so hard. We get sick. Then we get sick again.
At times, it will get frustrating, but it’s so important to remain calm. When your loved one is in pain, they will be at the mercy of forces outside of their control. They may be emotionally needy, distant, angry or sad.
Regardless, it’s safe to say that the interaction may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities.
But if you can stay calm and keep a cool head, the tension will always pass. You will be supporting them in a way that will make their pain easier to endure. At the very least, it will give them one less thing to worry about.
It can be difficult to support your loved one in this way, but it’s worth the effort.
When someone you care about becomes chronically ill, it can force a wedge into the relationship. And if you are unprepared, it can push away the person you are trying to support. But you can bridge the gap if you approach it with the right understanding. It can strengthen the bond and offer the opportunity for growth, both together and as individuals.
If you can practice these five principles, you will support your loved one in a way that truly makes a difference. You can be a beacon of hope, shining light into the darkness of their day.
In a world of people who don’t understand, you can be the one who does.
Follow this journey at Mind Over Meniere’s.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.