T O P I C R E V I E W
Member # 46848
posted 06-28-2010 11:48 AM
Hi. I just really needed to talk to someone about this.
I have an autoimmune disease that causes swelling in my brain. This results in medically induced mainly tics, OCD and anxiety, (plus overall un-well symptoms that autoimmune diseases produce) which I only have when I have a current infection, which I quickly treat with antibiotics. The symptoms then go away and so the rest of the time I don't have a problem. But I was only diagnosed six months ago. Before that, I was sick with this for four and half years, so I ended up having a lot of horrible experiences with panic/OCD in a lot of places. Since I was diagnosed, I've worked really hard at going back to the places where things happened back when I didn't know what was wrong. I've had some talk therapy and cognitive behavioral therapy. I didn't feel like either addressed the issue (that it is medically-induced, and thus not an emotional response that I can control) and have stopped for right now, but I'm still using the ideas I got from them over my regular (I believe justified) fears about the places where I had horrible OCD/anxiety. For instance, I made a list with a CB therapist of the places where I was afraid I would have OCD/anxiety again. There were 12 places. I only have two left, and they were the places where my OCD/anxiety was the worse (like I thought I was going to have a psychotic break right there). I intellectually understand now that my OCD/anxiety is caused by bacterial infections, that if I go back to these places I WILL NOT have OCD/anxiety simply because I am there. But understanding intellectually is different that understanding emotionally, and I'm still scared. I view those OCD/anxiety attacks as traumas, as serious as any other medical trauma. I feel like if someone had a heart attack in a particular stairwell, say, it might take them years before they were able to go back there and not feel scared of it, and that everyone would respect that. My problem right now is that my family and friends are pushing me very, very hard to go to these last two places (one is where we typically vacation during the summer). I understand that I'm putting the stops on their vacation, as I have the last two summers. It's putting the stops on my vacation too, and that totally sucks. I have said several times that I am working on it, that I don't want to discuss it anymore, that it will be ok when it is ok. I try to be as nice as possible, but it's hard not to get snappy when being pushed. I have explained what I am waiting to feel before I do these things (I want to feel so healthy there is no chance that I have an infection brewing; it's slightly irrational, but I've only had a couple of days in a row of not being sick since starting treatment; it's hard to schedule things and believe I'm actually going to stay healthy for that day; I'm constantly afraid I will wake-up, realize I've gotten and infection and that my OCD is back). And still, every single conversation is about this. No one is interested in me anymore, they're only interested in my disease and the fears I have surrounding it. They don't care that I work on things in a support group, and they don't care about all the HUNDREDS of things I have accomplished or the fact that even though I'm feeling well, I'm not back to 100% yet. I have explained to all of them that it typically takes to people 3 years to feel well and get back into their lives after they begin treatment with antibiotics with this disease, and that it it has only been six months and four days since I started out. I'm not sure exactly what feedback I want, but I'm feeling so pressured and lonely right now, because there's not a lot of people I can talk to about this. I can talk to people from the support group, but they're so understanding I wonder if they're a bit biased about the situation. I guess I'm wondering if my family is right to be pushing me on this. Am I just being a baby about returning to the places where I had these horrible experiences? And, just a PS, my mom is the only one who is on my side in this. After I was diagnosed, she realized she had this too when she was in her twenties. She believed she was agoraphobic, but now can link her anxiety/agoraphobia to bacterial infections. So she understands, but the family is putting a ton of pressure on her to push me, which I feel really guilty about. I think they're afraid of me being like she was, but she was undiagnosed; I am diagnosed, I have my plan of action from the CB therapist, I've already accomplished so much, and I want to feel good about that without them digging me about these last two little shortcomings. Thanks in advance.
Member # 37835
posted 06-28-2010 12:33 PM
Have you thought about having a session with either your therapist or a doctor where you invite the whole family?
It might really help to have them hear from a professional that these things really are out of your control, and it's more than likely that your therapist will be willing to have such an appointment if you go over exactly what you want your parents to know about your condition. Beyond that, I really do feel like it's wrong for your family to push you beyond what you're ready for right now. This is a very real medical problem that deserves your family's respect. Think about it this way--would it be okay if they asked you to run a marathon on a broken leg that had barely started to heal?
Member # 3
posted 06-28-2010 12:37 PM
I don't think you're "being a baby." Rather, it sounds to me like you're doing the best you can to take care of yourself well, to acknowledge your own limitations right now and to try and set the boundaries you need.
I'm in agreement with you than when people have strong anxiety/anxiety attacks around something, someone or some place it's traumatic, and PTSD responses to those places, people or things are very common. I also am not of the mind that trying to push oneself into any of those to try and heal before one feels ready is sound. When it comes to figuring out when the right time and place is, it should be about your own gut feelings and what a therapist you are working with suggests, ideally as a team. However, I still think your gut feelings and wants should always come first. Can I ask how you're putting the stops on THEIR vacation? For instance, is it possible they could take it without you, or choose somewhere new to vacation? Heck, what if everyone else goes one place, and you and your Mom take your own vacation somewhere new this year?
Member # 3
posted 06-28-2010 12:38 PM
FYI, I LOVE atm1's marathon analogy. That might be a great one to bring to your family that they can understand.
Member # 46848
posted 06-28-2010 01:21 PM
I love the marathon analogy, too. I'm going to use it on the next one who pops out with a comment.
I feel like I've done everything I can to explain this as a medical issue. The response that I get most often is that a) I should be able to control the OCD/anxiety when I have an infection, b) that when I am feeling well, I shouldn't worry about getting sick in the situations where I have previously been sick. So I have showed them the studies on this over and over that explain otherwise. So I sort of feel like they shouldn't need to meet with a therapist. I feel like they should just trust me when I say, for example, "I've got strep throat. No, my throat doesn't hurt, but yes I feel like I need to continuously tap my foot back and forth. Yes, I know that's not how most people react to having strep, but that's how I react." And then they should just believe me and let that go. And as for the fears I have about the situations where I was in while I was still sick, I feel like they should really, really just respect me saying that: I am afraid of ferry boats now. I had to be on the ferry a lot during my last exacerbation so I had a lot of OCD episodes here. Yes, I want to get back the ferry so we can all go on vacation, but I'm still scared." And then they should just believe me and let it go. And also, honestly, I don't even want to talk about it with them anymore. Every time I say, "I'm not comfortable doing that yet; I'll let you know when I am" they pressure me for the details of what happened in that situation. I have to relive the memories of this over and over; I don't feel like I should have to bring it up all the time. It's bad enough that I had to explain it to at least ten teachers in high school, several in college. It's so personal, and no one gets that. How can I explain to them that they don't get to know my personal details just because we share genetics? Yes, they could take another vacation, or even go to the regular one. They say they don't want to go without me. Which is really their own decision and I feel like they should take responsibility for that, rather than making it seem like they're waiting around for me. This is a frustrating situation, I understand, and I know they want things to go back to normal, but I don't feel like I should have to make them feel better about it; I've got enough to deal with. And I guess, I just wanted to know from you guys, do you think it's ok to be scared still? I've thought that I've been going crazy for years, and now it's only been six months of knowing that everything is going to be ok, and that all of those horrible times weren't my fault. Am I being too slow in adjusting? Thanks so much for your help, I'm feeling better already.
Member # 43628
posted 06-28-2010 01:26 PM
evfb, although I don't have an autoimmune disease I have a recurring medical condition that can keep me from going places sometimes and my family is not always understanding of this as well.
I'm sure you know that it's often impossible for people who don't have your illness to understand what it's like. It seems like you've done a good job of educating your family about your condition and explaining your limits. Although it's incredibly frustrating, even when you've explained everything you possibly can, your family/friends still may not get you. I think atm1's suggestion of inviting your family to a session with a therapist or doctor is an excellent one. Sometimes people need to listen to someone else/a professional to really understand what you've been trying to tell them all along. I get what you're saying about how maybe your support group is too understanding. As frustrating as it is, most people won't be as understanding as that and so it makes sense that you'll want to approach your family in a different way than you would talk at the support group. That doesn't mean that your family is right to push you. It just means that you need to find an effective way to communicate your limits to your family. This is where I think atm1's idea is a good one. I also think Heather has a good point about rethinking your vacation plans. You're not messing up anyone's vacation; your family could always go without you. But dragging you there against your will would be messing up *your* vacation.
Member # 43628
posted 06-28-2010 01:36 PM
Haha, I guess you posted right as I was typing my message.
About feeling scared still, I think that's absolutely normal. My condition is way less traumatic than yours, but I still freak out when I think about how years ago, before I was diagnosed, I started getting sick and whenever I start feeling sick now I also get very scared, even though I know it's going to be ok. Feelings are feelings, you can't control them even if you know that things are getting better for you.
Member # 3
posted 06-28-2010 02:07 PM
Does your therapist for this think you've been too slow in adjusting? Do you -- and by that, I mean you yourself, not how you might be feeling based on what other people are saying.
(Btw, I agree with you that the other folks should be taking responsibility for their own feelings. Absolutely. In fact, it's kind of all the more ridiculous they're not because they're effectively asking you to take way more for yours than is fair or reasonable.)
Member # 46848
posted 06-28-2010 02:36 PM
Coralee: thanks for sharing about your fears revolving around your disease. It's always good to hear I'm not alone. And I think you're right that more effective communication will be important.
Heather: The CB therapist thought it would take me some time; she never gave me a set date. It was sort of like, if you're moving forward, you're doing fine, which I am. She said she'd give me a referral to another CBT guy closer to home if it felt like I needed to keep going. So I definitely have access to more if I need it, but the last time I saw her was in April. I feel like I've been doing alright on my own with the plan we made so I've kept her referral on the back burner. I had decided with my parents that if things hadn't gotten better in six months (which would be the end of October) we would move on to IVIg which is a IV treatment which would basically give me a new immune system (so that my immune system would stop attacking my brain) and that if that didn't stop the occurrence of OCD I would go on with the CBT. So as per that therapist, my mom and dad (he's not one of the big pushers of the family, so I guess I could count him on my side too) and myself, I don't feel like it's too slow for the nature of the disease. Overall it's too slow because I want my life back, haha, but realistically, I feel like I can be happy working within these bounds right now. It's just my family and some friends who are not respecting that. I guess it's just a confidence thing. I used to an incredibly confident person, and then when I got sick and had to leave school, the only thing I was ever really good at, I started to doubt myself. And then I started having the OCD symptoms, and that made me doubt myself because I really thought I was going to lose my mind. I had no understanding of how there are some physical illnesses with psychiatric symptoms. I thought crazy was crazy. And now I understand what a hurtful word "crazy" is. Whether you have a mental illness or a physical illness with psychiatric symptoms, it shouldn't detract from your humanness. And before I was diagnosed, when I was doing talk therapy (because we thought I must have had some trauma that caused these problems) the therapist tried to have me put in hospital for the OCD. And that really scared me, and REALLY made me doubt myself. And, now I know, wouldn't have worked anyway, since they wouldn't have given me antibiotics. So I have to admit, even though it might help with all the doubt, I'm afraid to go back to a talk therapist because if they don't understand the difference between my medically-induced OCD/anxiety and my emotional fears around it, they might try to put me in a hospital. I'm nineteen now--could someone just commit me like that? I'm sorry to ask, I'm just to afraid to look it up online. I kind of don't want to know; being locked up in hospital for something I have no control over is terrifying. I kind of feel like if I could be confident about myself, the fears would be easier to tackle. But every time someone jabs at me I immediately go back to that doubt. And that needs to stop. [ 06-28-2010, 02:46 PM: Message edited by: evfb ]
Member # 3
posted 06-28-2010 02:49 PM
Once more, it sounds like you're managing this incredibly well, and like you know what you need, where you're at, and what a sound and realistic pace is for you.
I think what you have said here could give you another VERY important sentence or two to share with the "pushers." In a word... <i>When people try and push me to a place I'm not at yet, it actually results in setting back my own progress a little further. If you want me to be able to move forward -- something I want, probably much more than you, since it's my life and about me -- the best way to do that is to stop pushing me and trust my own pace and my own efforts to heal.</i> Per the commitment, with the kind of illness you're talking about, where you're not hurting yourself or anyone else, involuntary commitment is not at all something you likely need to be worried about. You also have the healthcare providers you are seeing who DO understand the nature of your illness to vouch for you and make clear to anyone that would be inappropriate and not at all therapeutic for you.
Member # 46848
posted 06-28-2010 03:00 PM
Thank you Heather, atm1 and coralee!
I'm feeling so much better about this. So I think I'm going to concentrate on conquering the last few places I'm scared of and keeping my health steady. Those are most important, right? And in the mean time, I'll tell my family what you suggested, Heather. And now I know talk therapy is a possibility if I want--I still don't understand why that therapist tried to do that to me. I wasn't hurting myself. The more I read about appropriate therapist-patient relationships, the more I wonder if she was really a good person to be going to. But it's still got me a bit gun-shy, which I hope I'll be able to work through in case I ever need a therapist again, now or sometime in the future. I have a feeling I'll be back around in the next few weeks. You guys are great for a confidence boost!
Member # 37835
posted 06-28-2010 06:24 PM
I'm glad you're feeling better about this.
Focusing on staying healthy is definitely the right goal here. If you weren't a danger to yourself or others, than a therapist shouldn't push for involuntary hospitalization. Sure, they can encourage hospitalization, but unless you give clear indications that you might hurt yourself, it's inappropriate to try to force it. After that experience, I completely understand why you'd be nervous about a new therapist. If you ever start therapy again, I'd encourage you to start off with that story and explain why you've hesitated to restart therapy. Good luck with everything!