Support After Loss and Illness: Is It Okay to Not Be Okay?

When my partner died of AIDS, the world became a maelstrom of dark emotions and platitudes. At the end of his lingering illness, what was left was fast-tracked to cremation and a memorial service. It was as though everyone was ready to move past the pain and suffering and move on with their lives. As I delivered his eulogy, I thought I was too.

The morning after the service, I woke early, grabbed the floor fan that had blown across his fevered body for so many months, and began to clean it on the balcony of our apartment. It was tedious work, and I don't know why I chose to do such a thing, but somehow, it was helping me to sit and sort the world out.

My neighbor stood nearby, watching the hurt on my face. She told me that I probably couldn't see it now, at that moment, but if I gave it time, the pain would eventually go away. I thanked her and kept cleaning the fan.

When the hurt doesn't go away

Over the following months, I received similar advice from friends and family. Whenever they asked how I was doing, they were ready to tell me that I needed to move on and stop dwelling on what had happened. Time and time again, they gave me what they thought was good advice, but I began to realize that I wanted something else.

I needed someone to tell me that the world was ending, that genuinely horrible things had happened to me, and that my heart might never be whole again. I wanted someone to acknowledge my pain and not try to heal me.

Still looking for that support

For the past year, I have been cancer-free, and I have also been terribly depressed. It is strange being in both of those spaces at once. I'm grateful for the early diagnosis and successful treatment, but it was one of the scariest experiences of my life.

The disbelief that I would live so long with HIV that HPV-related cancer would possibly take me out was mind-boggling. And on top of that, we were still battling my husband's cancer. Life just kept taking swings at us and knocking us down repeatedly.

And just like when my partner passed, people are filled with advice and commentary on what they think I should do. They don't understand when I'm not in the mood to celebrate good news from the doctor. They struggle with accepting my crippling anxiety when I worry about things that probably will not happen because I'm still in a state of waiting for the other shoe to drop.

Friends and family stopped checking in on me because they felt they couldn't help. They thought I wasn't listening to them. But they were basing what they were doing on their own expectations. They didn't know what support from them looked like from my perspective.

How can I get what I need?

My cancer diagnosis reminded me of one thing. Life will happen, and there will be other things that I will have to deal with as I grow older and live longer with HIV. So, what can I do now to prevent this from happening again? How do I teach the people in my life that it is okay for me not to be okay?

It starts with a willingness to discuss these things while I can, which means when I least feel like talking about them. But these topics are best brought up when you are not sick, and your mind is clear. Fighting illness and making your wishes known at the same time can open those topics up to interpretation as those closest to you, who will be executing the requests for you, will be dealing with their own overwhelming emotions.

What I have to do

I know I have to explain the why to them. I can't just tell them I need space to be alone and hurt. I must explain why I need time to think, process, and understand. Those around me need to validate my genuine feelings. It is the only way to truthfully experience those emotions and discover how to work through them honestly.

Once I share this, I must tell them what a safe space looks like. Sometimes, it's just me texting them with no response needed. On other days, I will want to sit quietly in the house or on the porch with someone by my side.

When I'm feeling strong, a nice walk or even sitting in the park can be what I'm looking for. But in these places, I don’t want to be told what to do until I ask them that question. Just listen and be supportive. Establishing this boundary is essential because it lets them know exactly where to operate and how to interact with me.

Finally, I need to empower someone to be my official check-in person. This person will know when I need help but will be too stubborn or embarrassed to ask for it. And I must agree to let them help me when I ask them to.

There are so many things to plan for as a long-term survivor. One of the most important is helping the people around you understand what you need from them while you can.