Friday, 18 March 2016

The Side Effect That I Wasn't Warned About

"oh brother"
When you are first diagnosed with something, you are usually warned about side effects. Upon the diagnosis of Idiopathic Arterial Pulmonary Hypertension I was warned about side effects of the disease and side effects of the medication. PH can cause a variety of symptoms, or side effects, such has shortness of breath, chest pain, swelling, and heart failure. Some of side effects of some of the medications I take? Liver failure, cancer, anemia, low blood pressure (in all the wrong places,) head aches, stuffy nose. General malaise is probably a side effect of both the medications and the PH- and maybe life. I was prepared for all of that, but then something else set in.


I have suffered from both external and internal guilt as a side effect of PH. I feel such incredible guilt, although the feeling has faded as the years have gone by. I sometimes still find myself plagued by it. It is difficult to see how such a catastrophic that I had such little control over runs down hill. It effects so many other parts of my world.

I feel guilty because my life isn't the only life effected by all of this. Sometimes I find myself saying "sorry, I am sick." Apologizing for something that I have very little control of. Saying sorry, even though I know these situations will happen again. Unable to work, I still live at home and rely on my parents. I am sure they planned to retire soon, and I feel like I messed up their golden years because my golden years currently overlap with theirs.

Me living at home is also expensive for my parents. There are obvious medical costs, plus my crazy expensive food (because I eat mostly fresh and organic foods.) I see how my side effects so deeply impact them in various ways from socially to their well being. I hate that something that happened randomly hurts us all so deeply. I try to handle this human experience as graciously as possible, but it isn't always possible to sugar coat things. A positive attitude will help get you through the day, but it won't change the fact that I struggle going up a flight of stairs. I also think that you have to admit when things suck. It wouldn't be healthy to ignore your challenges, or to try and dress up a wolf as unicorn and hope that it doesn't eat you.

I feel guilty because the life I planned with my boyfriend is now very different. Sometimes I feel like I have very little to offer to the relationship. On paper, I feel like I kind of sound like a lemon. "Free to a good home: 28 year old girl-woman who can't drive, work or breathe on her own (for certain basic activities.) Very expensive special diet. Comes with Boston Terrier that you must also take care of." Hopefully from that line you can tell that I have a sense of humor, which is one of my selling points, beside my really cute dog.

Spencer has stuck by my side through my diagnosis, which I am so grateful for. (But it also has made me feel guilty.) He has so much life a head of him, and I don't want to stop him from following his dreams. This experience has really shown me what is valuable. Through all of this proverbial crap I have become a more supportive and grounded person. However, that doesn't change the fact that I probably won't have biological children. Or the fact that I am not sure if I will be comfortable adopting because a few doctors gave me the life expectancy of a hamster at the start of all this. I worry that my situation will effect what jobs he will want. I don't want him to take the job with benefits over a dream job because of me. I don't want him to have to take a high paying job that he hates because I cannot work. We were supposed to be partners. Equal partners with different strengths and weaknesses to balance each other out. I am strong as hell- but are these new found strengths valuable for "real life?" I feel like I am not apart of real life, but a mere by stander watching from the outside. I know he doesn't view me as an invaluable counterpart, but sometimes I wonder what I truly can contribute to our relationship.

I also feel a lot of internal guilt. At the very beginning of all of this I blamed myself for getting sick.

"I must have done something wrong."
"Healthy people don't get sick."
"Was my diet really that bad?"
"Did I really stress that much more than my peers?"
"What did I do so differently than other people my age that this happened?"
"Am I being punished? Did I get sick because I am a bad person?"

Those are some of the thoughts that I really struggled with. I felt as if that I must have done something wrong to get sick, especially because I was diagnosed with a rare disease. Overtime I have tried to accept that the perfect storm must have been going on in my body that allowed the disease to develop. I didn't do anything to "deserve" this, it just happened.

I believe that holding on to and hoarding negative emotions are not healthy. I have made progress releasing a lot of the guilt that I feel over being sick. Obviously life happens, and the feelings bubble up from time to time. However, it is important to handle those feelings appropriately. I accept that I didn't do anything wrong to get sick. There was probably nothing that I could have done to prevent it from happening.

I also accept that my parents love me so deeply and unconditionally. My parents helping me, taking care of me and going well above and beyond the call of parents of a 28 year old child are all an act of love. I know that them taking care of me, and supporting me isn't even a question, hesitation or thought for them. They want to take care of me. I know that they would want me to feel loved through their actions, and not like a burden.

I also know that Spencer loves me, and rarely sees the disease. He understands that although being sick dictates very important aspects of my life, the disease isn't who I am. He supports me through all of this, and sees who I am truly am- which is why he sees me as an equal and valuable counterpart to the relationship. I know that his companionship is something that he chooses to offer me, and he that this is another act of love.

It has taken me a few years to slowly release all of the guilt, and to slowly accept all of the love that others want to give me. I've learned that being sick isn't the time to start denying yourself love and simple pleasures. For me, it has become a time to indulge in all the good things that I can. For me, I try and find the beauty in every day.

(Please note: I refuse to refer to it as "my disease" or "my illness." I have no ownership over it, and it is not a characteristic or trait.)


  1. I was diagnosed at 26 and I didn't know about anything the Dr's were telling me because they caught it in the early stages and I preferred not to know more thinking it was going to get better. As I read up on the disease the more I started to realize I have to turn my life around for the better and to keep me around longer. I am now almost 31 and I am slowly reaching my personal milestones that I have made for myself. The fact of everything is that anyone only has so much time on this earth and I truly believe that "guilt" or even "anxiety" are huge factors that I never thought would be a challenge at our age. I hope the best for you, and this is a illness we and many people are fighting and these are side effects I also was not told about but am working on a solution for them :D keep PHighting!

  2. Reading your story made me realize that is what I have been feeling but couldn't put my finger on it. Reading your story made alot of sense. I was diagnosed at he age of was quite a shock...good luck to you you are awesome. Terri. ( Kickstand )

  3. Reading your story made me realize that is what I have been feeling but couldn't put my finger on it. Reading your story made alot of sense. I was diagnosed at he age of was quite a shock...good luck to you you are awesome. Terri. ( Kickstand )

  4. To some (including myself) I think I sound like I'm being dramatic, when I truly know that I am not. Most people, even those whom have known you a long time think, this too shall pass and if I have survived longer than 3 years, it can't be that bad. Its is almost impossible for others to know what PH feels like. The near passing out, dizziness, chest pain, congestion, dry cough, stairs bring anxiety, wondering if I'll keep up pace with the group, while looking "beautiful" (some people really don't know how to understand that looking pretty on the outside, while my heart is pounding, I'm extremely dehydrated and can't drink more fluid......dehydration causes confusion, agitation, unstable heart rate, o2 depletion.....and so on...if I say how I am truly feeling, they don't believe it to the extent that it is. So yes, sometimes I get frusterated and come across sounding like a BIT_ _ but in my 10 year of having PH, I am grateful to be alive and don't find myself thinking I HAVE to cover up or pretend so much anymore. I want to live with PH and the people I love. I wish to have those who love me, want to be around me and assist me when able, without me feeling like a burden! Thanks for your honesty and sharing. It helps somehow to know that there are others that do understand and for those moments I don't feel crazy or guilty!

  5. Your story touched me so much. I don't have PHbut my youngest daughter who is now going on 10yrs old was diagnosed 4yrs ago. I try to be strong for her because I don't want her to mimic having a negative attitude towards this disease. Don't get me wrong there are times that she says I hate this disease and why did this have to happen to me. It just breaks my heart�� . The first 3yrs I lived in fear of leaving her alone, so she went with us where ever my husband and I went. One of us had to be with her. We found a great church and church family which has helped tremendously and we have learned to give this bad situation to God and stop living in fear. We've had some hospital visits; more than we care for but I am no longer tied down. The one thing that I always tell my baby girl, especially wishes putting her self down because of circumstances that we can't control is that I wouldn't have it any other way. I have you here, now, in my life and that's all that matters. I don't know what I would do if I didn't have my Tatiana in my life.

  6. Your thoughts are on the right track. Keep thinking positive and not stress the things you cannot change. I was diagnosed at 17 with a life expectancy of maybe 20. I got a bilateral lung transplant on my birthday at 32. Twelve years I beat them. That was the start of me proving the doctors wrong. I've learned a lot along the way.. I will soon be 57. It hasn't been easy, but life never is. I wish you happiness and joy to keep you going .

  7. I was diagnosed with idiopathic Pulmonary Hypertension at the age of 31, I am now 32 and I am still trying to come to terms with some of my guilt. Your article touched my heart and told my story in such a way that I never could. Thank you for sharing it!

  8. I was diagnosed with idiopathic Pulmonary Hypertension at the age of 31, I am now 32 and I am still trying to come to terms with some of my guilt. Your article touched my heart and told my story in such a way that I never could. Thank you for sharing it!

  9. You are a beautiful writer and captured your story eloquently. It touched me and can empathize with your young age and your life ahead of you. I am a RN, was very active but was diagnosed with PAH or all the various different names in 2011. Initial shock, fear, disbelief, anger and eventually I am going to die anyways so why bother became my mental attitude. Initial prescribed medications sent me into crises. I have lived with the conditions for 5 yrs + and will be turning 57 in a few weeks. I now realize having PAH is not a death sentence. Looking from the stories shared earlier there is Bette who has lived with PAH 40 yrs. Be strong and choose to live your life regardless, because choosing to face your fears to live your life will guide and push you to your limits to experience life. With or without PAH Life is difficult. I care and wish you well. We are behind you cheering you on. Don't hesitate to reach out as necessary.