It hurt so much more when I learned that my sister had a chronic illness, then when I found out that I had a different chronic illness, too.
All I wanted to do was scream at whoever the creator is about it’s cruelty. My sister does not deserve it I kept on thinking. Yet I have never thought that about my own diagnosis.
We experience such news from different perspectives.
As a sister all I want is to protect and I was helpless in this discovery. I’m not a doctor and I knew almost nothing about MS (multiple sclerosis). Yet I wanted to be able to support her somehow. So I did my best, I listened to her and tried to learn about her condition on the side.
Whilst as someone who got a diagnosis:
For me it was part relief, because I finally knew what was behind all the physical misery and that I wasn’t weak I simply had adenomyosis.
The other part was a full blown sense of victimhood. Why me? Why anyone? Sort of questions.
The victimhood transformed as I got more understanding of what it is and what I can do. Now I don’t feel it much, as therapy and coaching helped me to shift my perspective to understanding that people with illness are not victims. They are people with challenges that influence their daily lives, but not victims who need saving.
Yes we need support, but that is different than being saved by someone (having power vs giving power away). Perhaps I will write about this in more detail one day.
The perspective matters, and if you are in the shoes of the supporter, here’s what you can do:
- Understand that you have control only for your actions and your loved one has the power to choose how they act. You may think it’s helpful to tell them what to eat and how to change their life to get better, but all they want is for you to either be there or listen. Most probably the doctors are already overwhelming them on instructions on what to do and you can help by figuring it out together, if they feel safe to share that.
- The most helpful actions will often come from their needs, so simply learn to ask them: “What do you need the most right now that I can help you with?”. We absolutely need to ask this, because many of us don’t know how to ask for help and how to receive it. It on its own is a hard change to ask someone to make you lunch or clean your laundry, or listen to you whilst you feel weak and need to cry. All of this is vulnerable and by asking this question you give the strength to your loved one to support them in a way that they feel comfortable with. It is also ok, if they don’t know yet. Keep on asking and tell them why it is important for you to help.
- Educate yourself on their specific condition so that they do not have to explain it to you. I need to explain what adenomyosis is almost every time I mention it publicly. I’m grateful when a person knows what it is, because then we can have an actual conversation about it. Instead of me explaining, I can talk about my experiences and feel more heard and seen. By being one of the close persons they can talk to about how it is can help to feel less alone.
As you may have noticed these actions involve vulnerable and uncomfortable conversations and actions from your side. For the communication to be truly giving you need to listen more, than talk. This may be your chance to train how to be a better listener.
Everyone’s illness story is different and that also is important to understand. Although I have adenomyosis I am able to live a comfortable life as I’ve found simple treatments that work for me, whilst I know women who need operations for that same result, and there are many women who eventually remove their cervix to get back to a normal life. Whilst others never do.
A life with chronic illness shakes up the whole lifestyle we had before, and grieving that is a big part of it. By caring for your loved one, you may see ups and downs, but know that your support means the world for them. They can’t and don’t have to go through it alone and that’s the greatest gift you can give to them. Your love and attention is what they need the most and what you can choose to give.
Whilst I don’t wish for anyone’s loved one to get a chronic illness, nowadays I’m grateful that I get to share my experiences with my sis’ and we can talk about it as it is. We understand the process and although we have different issues, we support each other the way it is most helpful at that moment.
P.S. If you have a chronic illness, I coach on this topic as well. It is a specific type of coaching, so we always need to have an intake free call to understand if coaching can be helpful at this moment.
I’ve benefit from combining: 1. finding healthcare professionals I trust. 2. going to a psychologist to deal with my grief and worries. 3. coaching as a method to find helpful ways to create a future that is loving and sustainable towards me.
