This topic contains 10 replies, has 4 voices, and was last updated by  Brittany Foster 1 month ago.

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  • #17635
     Brittany Foster 
    Keymaster

    Anxiety due to hospital stays, surgeries, traumatic experiences in an ER etc has been part of my life since I was a younger child. A lot of times this anxiety came through in physical symptoms like headaches and stomach pain when I was a kid. Back then, I couldn’t express everything going through my mind and the feelings I was having in my body. It all seemed so scary and out of my control.

    As I got older and in my teens, my anxiety really manifested itself in doctors appointments, particularly PTSD related to my health. In my teens I started to actually LEARN about my conditions and tried to not just take a back seat in appointments. Even though I went in with good intentions, I would go into an office and not say one word to the doctor. I would have panic attacks as surgeons with their scrubs would come into the elevator with my mom and I. This was a really difficult time in my life prior to getting the help that I so badly needed and talking to a therapist to begin to make sense of all of this.

    Even though I am a much better advocate for myself and am no longer afraid to speak up to doctors and talk about my symptoms and concerns, I have other struggles. I find it very anxiety provoking to talk about my health conditions to doctors who are asking. Usually I have to explain myself to the doctors who are in training before my actual doctor comes into the room. Talking about my different conditions triggers my anxiety because it’s a brutal reminder that I have them and that I’m trying to manage them. Listing out my medications and the reason for taking them is another trigger for me as I realize, “wow I really depend on a lot during the day.”

    In the moment this makes me feel clammy, turns my face eight shades of red, and makes me feel scared, embarrassed and anxious all in one. I am a lot better at talking about my health with doctors who I know and trust but just talking about it to ER doctors who don’t know me or fellows who I am meeting for the first time is overwhelming, to say the least.

    Do you get these feelings of anxiety and worry when talking about your medical conditions or recalling medications etc. at an appointment? What are some things you do that have helped ease your anxiety around this?

  • #17878
     Valerie 
    Participant

    Brittany, this is all so familiar. Every time I get an appointment with a new doctor, I have to tell more and more extensive medical history (because every year different problems are only added). I blush and try to control myself. But it turns out bad, because self-pity causes tears. At the end of last year, a neurologist woman prescribed me several sedatives at once, although she saw me for the first time (apparently, I did not manage to hold back tears). Besides, I’m afraid to forget to tell or ask about something really important. Also, sometimes I’m just afraid to say a lot, because it seems to me “excessive loading” of the doctor, who is now drowning in my problems. I want to note that all this is the best version of my visit to the doctor, when the doctor listens to me, and not rude and not shrugs.
    You mentioned doctors who are being trained. I ran into the interns once. I went to the therapist, and he had two interns in his office – a guy and a girl (they looked like they were 17 years old!). It was one of the unpleasant visits when I was nervous about the presence and whispering (no seriousness and attentiveness!), and the doctor was one of the worst and most unfriendly.
    One of the things that makes me and the doctor blush (especially if he’s a man) is when he asks what I’m taking. I answer “sildenafil” and he asks “what is it?”. I don’t even know what to say to him.
    In general, anxiety and nervousness really accompanies any trip to the doctor (even an annual medical examination for work). All I can do is take deep breaths, think of something distracting. If I know that I can cry – I take a paper napkin and endlessly fold it while telling something. Well, if the wall in the office hangs a picture, or a beautiful view outside the window. My cardiologist has a view of a high-rise building, and I look at it, or at children’s paintings on the walls.

    • #17898
       Brittany Foster 
      Keymaster

      Hi Valerie,
      I’m so sorry you are also going through anxiety and nervousness when at the doctors. We definitely have reasons to be anxious and we have been through so much. I find myself apologizing for crying or apologizing for being nervous, but the truth is that we really don’t have anything to apologize for and all of our feelings are valid. If it starts to disrupt my everyday life and isn’t just situational anxiety then that’s when I usually will talk to my doctors about medications to help me, but so far I have been okay with generalized anxiety and it’s more situational like when I am getting a procedure or surgery or when I have a lot of testing done. Testing really bothers me and I usually do anything I can to avoid it.

      Those are great tips about looking around and noticing something that you can look at to distract yourself. This is a common anxiety reducing coping skill. That and looking for something you can feel, smell, keeping candy in your purse of something for taste. Just distractions through using your senses is a really good way to help you focus back into the present and calm the anxiety a bit

  • #17932
     V.R. Peterson 
    Participant

    My son hates talking to a new doctor whenever he notices something new. While he has a firm diagnosis that proves something is seriously wrong, he still has PTSD from being made to feel like a hypochondriac for so long before diagnosis. Even years later, it carries over, and he’s afraid that he won’t be taken seriously. Then he starts wondering if it’s his imagination (even though it never is). I think this is quite normal for anybody with a serious illness. Call it anxiety or PTSD (or something else), it still translates into a lot of mental discomfort for the patient.

    • #17939
       Brittany Foster 
      Keymaster

      I can relate to your son tremendously. It still haunts me in my sleep to even think about having that experience and always thinking that I have to “prove myself” to show them what I’m feeling to avoid being labeled wrongfully as “just anxiety”. I went years of needing a bypass surgery but before it was caught they told me I had an anxiety disorder that was causing me to pass out. I honestly will never get that out of my head and am always seeking some type of validation. It even question myself over and over again. “am I just imagining this? Is it really that bad? What will the doctors think if I call them and tell them about this?” For me I would say that it is PTSD because it can get so bad to the point where I have avoidance behaviors and won’t go to my appointments or avoid acknowledging the seriousness of a situation and just continue to do things as “normal” and sometimes will even put my health at risk. Thankfully I am a lot better with that particular part of my PTSD because
      I have been going to a therapist and opening up about this and some of my behaviors I exhibit when I avoid addressing my physical health. It stays with us and haunts us like a bad dream. Once you are told “it’s all in your head” the damage is already done.

      • #17943
         V.R. Peterson 
        Participant

        Brittany, it really does anger me that doctors will attribute symptoms to anxiety — because they don’t have enough training to figure it out. It’s 100% unfair to the patient, and I’ve seen it happen far too many times.

        I’m glad you’re getting help from a therapist who has been able to help you. Your health will thank you for it.

      • #17965
         Brittany Foster 
        Keymaster

        Absolutely ! This has been a huge factor in why I am so passionate about advocacy now and why I try to be a strong voice in my health care and my needs. I know my body best and the team that I have now are so great in listening and taking me seriously. The lack of knowledge of the previous diagnosis of “anxiety” was just so appalling but I am grateful that my therapist helps me feel validated through all of this and knows that I have made huge improvements in making myself heard and actually DOING something about it. I don’t accept “band aids” for my health problems. If something can be FIXED I want it fixed.

      • #17944
         Colleen Steele 
        Keymaster

        V.R., how old is your son? Mine is 19 and he went misdiagnosed for 2 years. Between that, living with PH and then having a transplant, I think he has some PTSD and sort of a quiet anxiety going on but he probably would tell you otherwise. He actually is very good about telling “me” if something new is concerning him or if he is having a flair up of some kind. However, he tells me because he wants me to talk to the doctors. His doctors want him to start having more of a voice about his health since he is an adult now. That has been a difficult adjustment for him. He has been guilty at times of waiting a bit to see if whatever he is feeling goes away. I think sometimes a part of that is not wanting to go to the doctor…again. Does your son get doctor burn out? How about you Brittany? It’s understandable, as mom and caregiver I get a little fatigued from all the appointments.

        What is your son’s personality? Mine has always been more of a listener than a talker. If you want someone to tell your problems too, he will be patient and let you talk, however he only gives concise and brief responses so if you want a lot of conversation back, he’s not your guy. I try to explain to his doctor’s that they also have to consider a person’s personality.

        Brittany, that is so sad that you went that long being told that your symptoms where from anxiety. My son can relate to that diagnosis too. It’s heartbreaking and aggravating to hear stories like yours and V.R.’s son. We need to see an improvement in early diagnosis almost as much as we need a cure!

      • #17966
         Brittany Foster 
        Keymaster

        I couldn’t agree more Colleen! I am such an advocate for early diagnosis and for helping others so they hopefully never have to experience the things that I went through and the mental and emotional pain of everything that I still am suffering repercussions from. I won’t stop until a diagnosis of “anxiety” is 100% a diagnosis of exclusion and not just laziness or ignorance.

      • #18031
         V.R. Peterson 
        Participant

        Colleen, my son is 30. He was diagnosed with PH about age 25, then with CTEPH two years later. He’s got a quiet “I don’t wanna talk about nuthin'” type of personality. He also hates going to the doctor. Thankfully, his wife goes to every doctor appointment with him, and she makes sure the doctor knows everything that’s going on with him. It helps that she’s a nurse, so it does him no good to pretend all is well. She can always tell when he’s not well. While I was able to tell when he wasn’t well, he always figured that I was just a worry wart mom. When he tries that with his wife, she gets out her stethoscope. 😀

      • #18038
         Brittany Foster 
        Keymaster

        I’m glad that your son’s wife is so supportive and that he has someone in his life who will pull out the medical equipment when necessary. A lot of times I have that “I’m fine” attitude. It is really a strong part of my avoidance behaviors when it comes to doctors and going to appointments or trying to avoid getting some type of testing or procedure done. I know what to do now to seem like I am getting by fine and when I don’t want to be bothered by my own health I tend to put up that “everything is just great” wall. Only a few can see past this. I am thankful for the ones that do and the ones that call me out when I need it.

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