You are not a burden

Recently NY Times released an article titled “Is it OK to Dump Him Because of His Medical Condition” (which you can read here).

While the letter writer seems to be in a new relationship, her concerns are valid. I think anyone entering into a new relationship where they may not have any experience with something permanent and life altering in many ways will feel intimidated. However, what triggered me was the wording of the response and the reminder of how powerful one word can be. The author is right, it doesn’t make you a bad person thinking about the long term impacts of the decision and if it is something that you have doubts around, you should maybe consider not going forward with it, rather than committing and then walking away.

My problem came from the statement: “When a potential partner is already seriously ill, committing to this person may be committing to a life as a caregiver…..You don’t owe it to anyone to accept that burden…”

I’m sorry, burden? Did you just somehow blame the person who is ill that this is their fault because they are the ones expecting that person to sign up for some sort of life sentence? This narrative is problematic and something that people with chronic illness hear ALL THE TIME.

We are a burden to our family, our friends, our partners, the health system, and society as a whole. Heck, insurance companies use this as justification to not include people with chronic illness for medical coverage related to their medical condition, because they are a burden financially. As if we asked for this.

Do you know how much I have struggled to learn that I am not a burden? That I am a worthy human who accomplished a lot DESPITE my illness? Do you know how deep this feeling of guilt has impacted me to the point of contributing to my depression? How often I pushed away my partner because I felt like I was making his life miserable? And it is still something I struggle with.

Let me share a story.

I have already talked about how my boyfriend and I were already over a year into dating when I got diagnosed. As things progressively became worse I kept telling him that I wouldn’t be mad if he wanted to walk away. Yes, it is a lot to expect of a person. There were many days where he was a caregiver to me. Many days where he had to drop what he was doing or put his life on hold to be there for me. And I hated asking him to do it. I hated that I had to lean on him so much. That he maybe felt like he couldn’t tell me his own problems because of what I was going through. And I hated that I felt like I was responsible for changing our future together.

Last week I had my clinical trial appointment and I am now on a phase that is for 5 years. Realizing that this is a long time, I asked what my options were if I wanted to get pregnant as I am 26 and my boyfriend just turned 29. Of course it would mean I would have to come off of the clinical trial. As of right now, this medication is not on the market yet, so I wouldn’t be able to just go back on after having a baby. So I either have to wait until it goes on the market and then go back on it out of my own pocket, or I try something else. But currently I only have 2 options left. So it’s a gamble that I would be responsive to it, especially given my track record already. My doctor said he was willing to support any decision I made, but that this had to be a planned decision that required talking with my partner, himself, and my gyno.

After my appointment I cried. I cried because it was something that I took for granted. I can’t just have an oopsie baby . Everything has to be planned and there is a high chance I can’t even have kids because I also have endometriosis to begin with. I cried because I was frustrated that my body was creating another hurdle to go over. I cried because I was now asking my boyfriend AGAIN to be okay with these decisions without really asking him. Of course I told him right away, bawling because I was completely consumed with guilt. It’s not like we were planning on having kids now, but we were forced to have another hard conversation before we were ready to plan and decide. In that moment, I again felt like a burden to him.

But for anyone who does feel this way let me remind you, you are not a burden. Because this amazing human took me in his arms and said it’s okay. He knew from the beginning that we might not be able to have kids, and he was okay with this. I was so confused. How? Then he told me about how in the beginning I was very open that I had endometriosis because it makes sex sometimes very painful, so I am not someone to just give it up easily. Instead of just hearing what I said, this man took the time to RESEARCH what endometriosis is and it was then that he learnt about the infertility often associated with it. And he still chose to be with me despite knowing this. He still saw value in who I am despite the uncertain future. And he continued to see this value in me even when I was diagnosed with UC. And still to this day sees value in me. And as I sobbed because I still felt the guilt of being a burden, he reminded me that for all we knew he could be the problem. Maybe I could have kids and then it ended up being him who had the problem with infertility. And I realized it was true. There are so many unknowns in this world. We can’t assume everyone is 100% and completely healthy. Much like this is an invisible illness, so are a lot of other conditions. But despite this, we have to be willing to choose this person over and over and see their worth and value.

Everyone, illness or not, just needs someone to believe in them. To be supported. To be empowered. Not be told that they are the problem. That they are the burden.

And you are not a burden. You wake up everyday and fight. You wake up and continue to choose living despite the pain, the chaos, and uncertainty. You continue to move forward, even when it feels like you are going backwards somedays. You are courageous. You are strong. And you are worthy. You did not ask for this to happen to you, but here you are showing up everyday doing the best god damn job you can, even though you might not have any idea half the time how to help yourself. You are amazing and deserve to feel like that.

And if you are with anyone who makes you question otherwise, then you need to consider if you really need to have them in your life. Because just like the letter writer can choose, so can you. You can choose to walk away from any relationship that doesn’t bring value into your life, sick or not.

And that my friends, is my rant. Be mindful of your choice in wording and how it can contribute to problematic narratives. We already struggle with this feeling, we don’t need someone to tell us. What we need is for someone to remind us why we are not, so we can continue to grow and strive.

Toodles my loves!

xoxo.

Bee.