My physical health has been up and down these last few weeks. I have my good days where I can get work done and enjoy life, but I also have my really bad days where I can’t get out of bed without feeling faint and dizzy. My mental health, on the other hand, has been consistently rough. My anxiety has gotten severe and even though I didn’t realize it at first, so has my depression. This is heavily due to the fact my future has been on my mind a lot lately, especially one certain aspect of my future; having kids. For as long as I can remember, I dreamed about becoming a mother. Tom and I had always discussed having children in our early twenties, shortly after getting married. But being diagnosed with Lupus has turned our entire plan upside down.
The reality is that having Lupus does increase my chances of miscarriage, birth complications and even infertility all together. Yes, I know there are many women out there with Lupus who have children and had problem-free pregnancies but there are also many who have not. Just knowing that we could have problems getting/staying pregnant and there is a chance we may never become pregnant at all is a thought that honestly breaks my heart. Before this diagnosis, we had a plan. Shortly after our 1 year anniversary, we would begin to actively try for a baby as long as we felt we were in a financially good space to do so. But now, that can’t happen. I need my health to be in check before we even consider trying. But we are also still on a timeline because the older I get and the longer I’m on my medication, the harder pregnancy will be for me and the risk factor goes higher. It is so hard to hear friends and family ask me, “so when will you guys have a baby?” knowing that I don’t know that answer anymore. It hurts having to explain why we need to wait and even explaining how it may never happen biologically for us. I always feared infertility issues, always scared that my biggest dream wouldn’t be able to come true for me. I wish I could get testing done now, to know before we start to try and have to experience heartbreak over and over again if it turns out that I can’t become pregnant or hold a pregnancy. But doctors won’t run those tests unless it’s necessary.
I thought by 24, I would be pregnant with my first child or already have a child. I never thought by 24 I would be diagnosed with Lupus, uncertain if I ever would be able to become a mom. I’m trying my hardest to turn this diagnosis into something positive, to use my experiences to help others. But some days, it’s just so hard to look on the bright side. I feel like I’m grieving, I’m grieving the life I had and the life I thought I would have. The life that was robbed from me by this illness I never asked for. I still have big dreams, dreams that I want so badly to come true but I always fear that my mental and physical health will keep me from ever achieving them. I feel constantly trapped, having to rely on everyone for everything because I can’t do things myself anymore. I can’t drive, I can’t work, hell, some days I can’t even make it up the stairs without help! When I go out, I constantly have to monitor how I’m feeling, often going through periods of lightheadedness and just an overall underlying panic of something going wrong. I won’t even go anywhere if Tom, my mother or my grandmother are not with me because at least I know they understand and they know what to do if god forbid, I get really sick out of nowhere. It sucks having to live like that.
People keep telling me that “it could be worse” and that “I’m going to be okay” and though I know they are right, some days I don’t want to hear it! Because the truth is, yea, it could be worse but this freaking sucks too! And I have every right to be angry and sad about having my independence ripped away! Than on the other hand, I have people compare my illness to others with the same and that hurts worse because everyone deals with illnesses differently and everyone experiences different symptoms. Just because one person is able to work and drive with Lupus, doesn’t mean that I can. I’m trying my hardest but I also can’t risk my life and my health getting worse. I’m at my breaking point as is and basically being told I’m not trying my hardest, that I’m being lazy and using my Lupus and anxiety as an excuse, it’s just beyond heart wrenching and makes me want to cry. Because I am trying my hardest, I’m pushing myself as much as I can.
I’m not happy with my life but I refuse to just give up. I guess I just need to continue taking everything one day at a time, hold onto faith, and no matter what, stay strong. That’s the only way I’ll get through this challenging time. Friends and family tell me how strong I am and how well I have handled this. But the truth is, what other choice did I have? I either let this break me or grow from it. And even on days like today, where I’m deep in my head and am feeling so discouraged, I know I won’t let this shatter me.
Until next time,
Kaylee D. ❤