5 Things to Consider If You Want to Support Me and My Chronic Illness

When I was first hospitalized and as the multiple diagnoses started getting tacked on to my medical file, all kinds of offers for help poured in for a few months. Meals, cards, words of support, prayers, etc. Most of them faded away. I got better, but I was not all healed as most expected, and I was not seriously sick enough to remain interesting. In other words, people got sick and tired of me being sick and tired. I am so grateful I do have a wonderful support system. It has had its ups and downs, but core people have not wavered. However, my support system is shrinking. I feel the main reason is the entire notion of what it means to be chronically ill.

Requesting and receiving help requires a partnership. Partnerships are a delicate balance of give and take. Frankly, it’s mostly take from my end. “But I only offered to give you a ride to the doctor.” Yes, I understand. Minimum commitment that hopefully makes us both feel good. I got to feel good about not having to drive myself. You got to feel good about doing your part to help someone in need. That’s great. Nothing wrong with that.

Here are some questions:

How many times are you willing to give me these lifts?

Are you expecting me to pay you? How much? (Yes, it would be appropriate to ask for payment, but please don’t expect to make a profit unless you are an Uber driver or something. I’ve got meds to pay for.)

Will you be willing to adjust the air conditioning to fit my needs and hopefully keep you comfortable enough?

That scenario was a simple one time task. Imagine this for long-term, more intense care requiring more commitment for someone with ever changing needs day in and day out potentially for the rest of his or her life. Are you up for the task? Think carefully before responding.

Two years after my diagnosis for lupus, my blood work finally started improving. During those two years my husband and children had taken over every aspect of household chores that I had done myself alone for over 20 years, and my husband was burnt out. He wanted to jump on the “she’s all better now” bandwagon by asking me to clean the bathroom. I tried to tell him I couldn’t do it, but I felt bad for all the extra work he had undertaken for two years. I tried. He came to check on me sometime later and found me on all fours in the tub crying, unable to pull myself up. We were not a partnership. We had failed.

This type of partnership requires trust, communication, belief, empathy, and understanding.

1. Trust

If I cannot trust you, I am not going to open myself up and be vulnerable to you – which I need to be in order for me to accept help. I need a safe environment. How can I trust you to help me out of the bathtub if you are critical or judgmental of me? If you think I am faking or exaggerating my conditions, then just stay away. That causes stress, and stress is a major trigger.

2. Communication

A number of things make it hard to communicate my needs. It’s humiliating to need someone to help me take a walk around the block. It’s remarkably difficult to match words with needs, thanks to brain fog. Be patient and listen carefully. Please don’t decide you know what I want before hearing me out. You may very well be wrong. And if you cannot fulfill my current need, be honest and say so. Don’t say you will and then bail. Yes, I need to listen to your needs too. I do understand this can be too much for you as well.

3. Belief

You have got to believe me when I tell you how I feel. If you don’t, back away. This relationship either needs to end or needs to be kept at arms length. I don’t have the ability to deal with judgments. It takes too much out of me.

4. Empathy

You can only be so empathetic if you haven’t lived it, but try anyway. This is really hard and emotionally taxing. Do some research, but be careful of your sources, and try to put yourself in my shoes. How would you feel if I had to come and help you out of your bathtub naked? Maybe you’re not helping me out of the tub. Maybe you’re just picking up my kid from school. My child is my responsibility. It’s humiliating not being able to handle my own responsibilities to my own child. How would you feel in my position?

5. Understanding

All of my conditions: Lupus, fibromyalgia, idiopathic thrombocytopenic purpura, lupus anti-coagulant, trigeminal neuralgia, are all chronic. I am chronically sick, chronically fatigued, chronically fogged, and chronically pained. You can walk away. I can’t. You can say no to a request for help. I cannot say no to the need for help. If I turn down some offer of yours, don’t waste my mental energy by taking it personally. Either it is not going to help and possibly even hurt me, or maybe you are preventing me from doing something I am capable of doing myself on that day – thereby maintaining some sense of normalcy. It’s not about you.

This life is really hard. I think people misunderstand and think I don’t enjoy my life. I love my life! I love to laugh. Life is amazing. It’s filled with life and love. I have much joy and gratitude. I have an amazing husband, kids, and now a grandchild. But it’s still really hard.

Walking this life with me is just as hard sometimes harder on the ones around me. It’s physically and emotionally demanding. I do not want to burden them or anyone else.

Now that I have explained, do you think you are up to the task? Think carefully…