How a caregiver can support a loved one with invisible illnesses.

1) Accept your powerlessness

Watching a loved one suffer 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 from butyoudontlooksick.com. It is a fantastic article and the most elegant description of what it’s like to live with a chronic illness that 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 suffering.

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 are 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 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 are suffering, 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 that 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, or distant, or 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.

Conclusion:

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 offers the opportunity for growth, both together and as individuals.

This was written by Mind over meniere’s  but can be applied towards any family member with chronic illness.  I know myself, I see the frustration of family members, wanting to cure me, fix me and What I have is not curable.  So There are times I want to be left alone, sometimes I just need to cry, I hate asking for help, I hate this disease but I also as a patient I have to remember it affects my family as well.  Kelly

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