Dealing with chronic disability, pain, and fatigue

[smallcleanrat]

Going to try to post here again when I can be more coherent, but had a therapist appointment today that left me feeling lower than dirt. Towards the end tears were rolling down my face and when she said she had to stop (even though we had started late and our allotted time wasn't over yet) I grabbed my stuff and bolted away so I could finish crying I the bathroom.

Psychiatrist's office is still not very responsive about getting me an appointment time. I haven't had an appointment for over a month.

I want help. I'm asking for help. But the people who want to help me don't know how and the people who should be helping me don't seem to hear me.

Yuk!

I'm very sorry you had to deal with that.

Good for you for going to the appointment and for doing whatever you had to do to finish it for yourself.

That is NOT how you're supposed to be treated!

Did they say "why" they had to stop? Surely they've dealt with people in tears before!

Stay strong. (At least you know you're stronger than one therapist in the world!)

M.

No, she didn't say why we had to stop. She gave no indication she even noticed the tears.

I'm paraphrasing in the following paragraphs because I was too upset to form clear memories of her exact wording (I generally have a good verbal memory).

I was frustrated because I wanted to specifically address the constant suicidal thoughts. But she spent most of the time lecturing me on the importance of sleep and exercise. She's given me near identical lectures in previous sessions; it really was not helpful to hear it again. In fact, it really wasn't helpful to hear her say it the first time, as I already knew it coming in. She knows my background is in biomedical research...

When I mentioned having had a frustrating experience with a suicide hotline, her only commentary was about how "Well, a lot of people do find them helpful." She asked me no questions about the circumstances under which I felt distraught enough to use a hotline, or what about the experience was so negative for me. Why didn't she care about this? This is what I need help with. Not middle school-level health science lessons.

When I brought up my experience trying to get an emotional support animal approved, she told me I don't qualify for one and that housing should not approve the request. I mentioned there are tons of animals around our no-pet grad housing, and their owners claim they are emotional support animals. She said, "They aren't support animals. They are pets that people pass off as support animals so they don't have to pay extra rent or airline fees."

Apparently, she was on some advisory committee a few years ago attempting to make the rules for support animals in student housing more stringent (but she complained the stricter rules hadn't gone into effect yet). She says the only people who truly need support animals are people who are so dysfunctional that they cannot leave the house or interact with other people without that animal. She says she's only met  2 or 3 people who truly qualify in her entire career. An animal shouldn't be approved just because it makes you feel better; it has to be undeniably necessary for you to function. And this person needs to be unable to get support from other people, including clinicians and therapy groups. If they can get support from people, they don't need an animal.

Me: But I read the housing guideline's list of criteria, and all it said was --
Therapist: I know what the criteria are! I know them very well. You don't qualify.

She is a colleague of my psychiatrist. Perhaps she will speak with him and convince him not to write me another letter.

The whole exchange made me feel like I was just another person trying to game the system; an entitled snowflake who thinks the rules shouldn't apply to her. This hurt...a lot. I always aim to behave conscientiously and legitimately, because I know cheating can hurt other people. I pay for my music downloads, I don't litter, and I refused to comply with my friend's prompting to go to the ER with a non-emergency problem after spending hours hopping from one overbooked urgent care clinic to next.

I broke down crying out of guilt when the urgent care doctor I finally got in to see chastised me for coming to urgent care: "You have [a lot of health issues] going on, and you're already on multiple medications. I don't want to make a treatment decision for you because of this. You really should have gone to see your primary care physician; you should have known urgent care can't do anything for you." I had tried to make an appointment with my primary care doctor; the closest date they had available was over 3 weeks away. One of my legs was tremoring and spasming so badly, I couldn't walk without someone helping me stay balanced. I had come into the clinic using a friend as a human crutch. It didn't seem like something to put off addressing for 3 weeks... But I still felt tremendous guilt for wasting other people's time.

This was a similar situation.

I hadn't seen this therapist in two months. Hadn't seen my psychiatrist in over a month. Weeks ago a professor contacted the student counseling center on my behalf and told me they would get in touch with me. Haven't heard anything.

If I actually killed myself, I wonder how long it would be before any of my treatment providers found out? Apparently I can just drop off the radar for weeks to months without any of them asking questions.

[Liquidambar]

Oh wow, smallcleanrat.  What a terrible experience.  It's not you; it's her.  That therapist sounds awful.  You need a better one.  Even if you're currently stuck with medical professionals who don't care, that doesn't mean nobody cares.  You shouldn't feel guilty about advocating for your health.

Does your student counseling center take emergency walk-ins?  The one on my campus does.  That seems worth exploring unless you know for certain that yours doesn't.

[backatit]

I agree - check with your center on campus. Ours also does walkins. You need a new therapist without such a specific agenda. I have a friend who works for the agency who approves support animal applications and unfortunately there are people who share your therapist's opinion, but at least as many who do not.

[spork]

Well, your therapist sucks. It's not you.

I recommend calling the psychiatrist's office immediately, using the messaging service if needed, to let someone know about the suicidal ideation. Keep calling the suicide hotline, odds are you'll get a different person who should be more helpful. And as backatit mentions, contact your campus counseling center.

Edited to add: the feelings of guilt and desperation are part of the depression. Medical care in this country is a customer service business. If you are not getting the service you deserve, it's perfectly acceptable to go to another provider or demand better treatment.

[smallcleanrat]

Thanks so much to everyone who replied. It really helped me feel less alone in this.

Checking the website, it doesn't look like our counseling center does walk-ins, but there is an after hours crisis number to call. I'm ambivalent about using this. The crisis services I've tried before were chat/text-based; I find it difficult to speak coherently when I'm mentally in a bad place. I'm also afraid if I say the wrong thing they will send police after me to force me into a hospital (something that's been threatened before).

This is also the center that referred me to the therapist in the first place saying she was "very, very good."

I'm still feeling pretty low from yesterday. My mind is spitting out thoughts that part of me recognizes as unwarranted and part of me feels are definitely true.

For instance,

Event: Therapist tells me I do not and absolutely should not qualify for an emotional support animal (even though my psychiatrist thought it would be good for me). I am surrounded by support animals in the student housing complex. I know at least two people at lab who say they had no trouble getting letters and approval to live with their emotional support animals.

My Brain: The people with animals deserve them; you do not. You are being irresponsible, selfish, and insensitive to people who are truly suffering by elevating your problems to be on par with theirs. You were trying to abuse a system designed to help people with real problems. The people who got their animals approved succeeded; you have failed (although I cannot pinpoint a specific thing I failed at; I just feel a failure).

Event: I tell the therapist I have been suicidal, and in enough distress to feel the need to reach out to a suicide hotline. She doesn't ask what happened, doesn't ask whether I'm feeling suicidal now, doesn't ask about whether I feel I can keep myself safe. She is finished with the topic in under two minutes, even though this is the only reason I wanted to talk to a therapist. I run out of her office crying. She does not ask about this either or send any kind of follow up message to check in with me.

My Brain: I'm just an annoyance to her. She doesn't care whether I live or die. Or she doesn't believe me; she thinks I'm playing it up for attention. Maybe she wants me to kill myself. Maybe ignoring the issue is her way of daring me to do it.

Before this, I had the frequent ideation and urges, even went so far as to research and work out details, but I fought against the impulses because I didn't want to die, and I knew the people around me didn't want me to die either. Now the old depressive convictions I haven't felt in years are creeping back and settling in: that people are sick of me and would prefer I die, that I deserve to die because I've failed to make good use of my life and will only continue to fail if I go on...

I know it's an overreaction. I know it's stupid. But I'm so tired; I feel so useless; and I don't know how to get myself out of this when I can't think clearly.

[spork]

As I said before, that therapist sucks. I would not describe her response as competent.

People are in your corner, rooting for you. The depressive thoughts are not "you." The real you has a lot to offer the world.

[mamselle]

Chime to spork, and the above comments.

YOU ARE A VALUED HUMAN BEING AND YOUR ISSUES ARE WORTHY OF ATTENTION AND HELP.

Do you have a close enough relationship to any of the people in your building with a support animal that you could ask how they traversed the requirement tree and who they found to be helpful?

Your therapist has control issues that are unrelated to your value or needs; they can't be helpful to you because they haven't gotten their own countertransference out of the way (translated: they need therapy themselves if this is how they present professionally).

Do not absorb their issues empathically in order to absolve them and give them a place in your mindspace. Let them go and focus on the next thing you can do for yourself.

You can do this.

M.

[Morden]

Dear smallcleanrat,

Please know that you are not alone. You don't have to feel better right now; you just have to keep going. Distress line operators are usually pretty good at listening even if you feel incoherent. If you get one who isn't, try again. If you get a psychologist who isn't, try again. Just keep going--even though it's hard and exhausting.

[smallcleanrat]

I'm trying to think through this support animal issue more thoroughly and rationally. Googled "support animal ethics" and pulled up all kinds of articles and editorials, some from mental health professionals. Trying to sort through factors to consider...there are a lot of conflicting opinions.

Maybe I'll make this its own thread; there was a related thread not too long ago, but it was about the specific problems of having a dog in a lab (not clear from the OP if it was a service dog or support animal; huge difference...), not about support animals in general.

I still very much want the cat (I think it would really help me reduce the self-harm behavior), but I need to figure out whether getting him approved as a support animal is justified or just taking advantage of a system with regulations far laxer than they should be.

I talked to the two lab friends about the process of getting their dogs approved. Apparently, all they had to do was get a letter from their doctor ("so-and-so has a diagnosed mental illness...the animal would help alleviate some of their symptoms"); they got no push-back or argument from building management (but they are not in student housing; perhaps student housing is just pickier). I don't know all the specifics of what exactly went into the letters, but one friend said the only rationale her doctor had to give was that a dog's need to be walked daily would motivate her to get out of her apartment when depression lowers her motivation to leave home. She doesn't bring the dog to lab, so she can clearly function without it. But the dog improves her life.

I think one of the reasons I felt so upset was because so many people told me it was extremely easy for them to get a support animal approved. Since it's not proving to be easy for me, it gives me the sense that my issues are trivial compared to everyone else's. But I think that if I get any worse, I won't be able to function well enough to continue school, whether I had an animal or not.

I already have days when I have to avoid certain parts of the lab where sharp tools are kept or avoid certain parts of the building where it would be easy to jump out a window or off a stair landing. Over the weekend I had to draw blood several times via a couple dozen puncture wounds in order to get relief from suicidal urges. If other people are struggling with worse, how are they managing? What am I failing to do that they've figured out?

Some people in the grad housing have multiple animals, and the housing requirements state that any additional animal must be justified via a separate approval request form detailing what service the animal would provide and why this could not be achieved with a single animal. That sounds even more difficult; how did they do that? Could some of them be lying about getting approval? Maybe they never bothered, and only say theirs are support animals when asked so that nobody reports them?

My SO wants to bring the cat in anyway ("better to ask forgiveness than to ask for permission"; "what are they going to do? raid the place?"), but I know if we did this it would eat at me every day. I want to do this the right way...

AmLitHist, I have a similar issue with one of our kids (we have 4; all with varying issues, but one daughter is having some serious issues lately, resulting in me having to come stay with her for a bit), so if you ever need to talk to someone who's been there, done that, let me know. I have a good therapist and I have to lean on him a lot to deal with boundaries and stress. Sometimes I feel like she's going to drag me and my partner down with her...sometimes work is a balm, and sometimes I feel like I can't cope with student's issues at the same time(which are petty, or not-so-petty, but seem really removed from ours at the moment).

Smallcleanrat, I'm sorry that you're having difficulty getting your pet approved. My daughter has a therapy dog, and I've noticed that she helps her, and her counselor also has a therapy dog who works with her, and you might look for that as an option in the meantime. She was able to get in fairly quickly by explaining to the practice that she was in crisis, and they had a sliding scale so that was good. I helped her find this style of therapy via a google search, so it might be worth looking into in the meantime (she needed trauma-based counseling for something that had happened to her, and so we were looking for a very specific set of therapeutic methods). I agree with Mamselle - it would be ideal if someone could stay with you; otherwise is there someone you could call or text when you're feeling bad? There is a tendency not to reach out for support because you feel like you're a burden, but I can assure you that we NEVER feel like that with my daughter, and her friends do not either. We've talked to all of them these past few weeks, and they have been very reassuring and one has come to stay with her from time to time when she's had a particularly rough day and I had to be back home.

backatit, not trying to be argumentative, but I don't understand how these two bolded statements are compatible. Would you be ok with elaborating a little more? How is feeling someone might drag you down different from feeling that they are a burden?

I've heard similar language from my family about how they've felt I was "dragging [them] down"; they've told me the stress of dealing with my issues is going to send them to an early grave ("I get so angry with your failure to get it together. When I think of you my blood pressure rises, and I feel like I'm going to have a stroke. Is that what you want? You want me to drop dead of a stroke?!?"); they've told me if I'm ever hospitalized again, I should consider myself disowned. I don't know they would actually do that last thing, but I do know they would consider it another failure on my part.

I can't remember if they ever used the exact word "burden", but "leech", "emotional vampire", and "weight around my neck" have been which seem to me similar enough in meaning.

[Puget]

smallcleanrat, I'm so sorry you've had such lousy support and awful comments from both your therapist and your family-- that's on them, not you.

In particular, the behavior you describe from your therapist is truly negligent and I would say constitutes malpractice. Fire her, report her (not necessarily right now, when you're better and have the energy for this), and find someone better (almost anyone would be better).

Do this now--The suicidal urges and self-harm you are describing are very serious and you need urgent care for them. Use your campus counseling center--be honest with them about what is going on, and I would be very shocked if you did not get an urgent appointment. On my campus any student reporting suicidal thoughts is seen immediately. If calling or walking over seems too hard, enlist someone's support to do it-- enlist a trustiest professor (I've called for and walked several students over), friend, or your SO. 

And regardless of what your family says, there is absolutely no shame in being hospitalized if that is what is needed right now to keep you safe and get you treatment that will help.

This is no more your fault than a physical illness. You deserve the healthcare you need to treat it.

Once things are more stable you can go back to navigating getting the cat (and having a better therapist will facilitate that).

And please keep posting here-- we may be strangers on the internet, but there are a lot of people here thinking of you and wishing you well.

[spork]

I agree with Puget: the suicidal urges and self-harm constitute an emergency. Putting yourself in the care of competent professionals is the best thing you can do right now. They can help get you into a better mental space where day-to-day life is much easier to manage.

[backatit]

Smallcleanrat, of course I'll be happy to elaborate. It's part of being a parent - things are complicated and often conflicting from one day to the next, even with one's adult children (I kind of left those two thoughts in opposition to illustrate that, but I probably should have clarified a bit and put them closer, but I'm struggling a bit myself right now so I'm a bit muddier than I am normally, which is pretty darned muddy sometimes).

Some days I do feel a bit like I'm drowning with our kids (especially our middle daughter - right now she's going through a crisis situation, and it IS draining and exhausting). But I also NEVER want her to feel like she can't come to me with it, because I recognize that my support is crucial. We struggle a bit with boundaries (we are both in therapy; separately and together; she lives in a different state, which contributes a bit to my own anxiety, but she doesn't want to move, so I have to balance support with letting go (she is in her early 20's, and we have always been very close and this is an ongoing issue of ours as she tries to become more independent which I support, while still trying to support her ongoing mental health issues) She's been suicidal in the past and I'm terrified this outside crisis will set her back so just telling me to step back doesn't always work all that well, you see. And the weight of the responsibility is not all that much, compared to how much I love her. She is not heavy :). I perhaps shouldn't be this honest in this thread about the mix of what I feel (I am semi-honest with her, actually, in that I articulate my own need for support from my therapist, and from my friends as I support her, in order to model that for her) because it may not be helpful for you. But maybe seeing how someone balances that might also be helpful, so I'm glad you asked me to explain further.

If you would like to talk to someone who specializes in approving emotional service animals, I happen to have a friend who works for the State of North Carolina and maybe she would be willing to talk to you about what to do - I know she can only reference her own states' requirements but she may know something about your state or may know someone in the pipeline in other states (or she may not - she's fairly new in her job). PM me if you're comfortable doing that with just the state information and I'll ask her.

[mamselle]

Re: support animals, in another context, I realized I know someone who volunteers on an equestrian therapeutic farm in the south; if getting an animal to come to you at the moment is hard, is there any chance of visiting one of the places where they are kept and trained?

Or, I know one local school near me that had visiting animals during exam week (a friend and I attended, just to see how they handled the program; her church may be doing something like that soon). Apparently, the visiting dogs we saw go on weekly rotation to two or three schools in the area, and are available for private times as well; in a different (graduate) school I know of, two or three of the grad schools in that university have worked together to book a constant weekly time for their students (I think theirs is Wednesdays at 3 PM) as well as having some on-call availability.

I know the person who arranges for that; I could ask what they know about more broadly available programs in other areas, as well.

M.

[smallcleanrat]

Thanks again for all the replies and encouragement.

I'm still struggling a lot with the self-harm. Caused more damage than I meant to with the last bout; nothing that won't heal given time, but I guess this is why I really need a better way to cope.

backatit, thank you so much for sharing a parent's perspective. I do appreciate your honesty about how your daughter's struggles can cause a lot of distress for you. I was in my teens when my issues started, but I didn't get a diagnosis or any kind of treatment until my early 20's. I'm well past that age now, so my parents have had to deal with the stress of having an adult child still struggling to function independently for quite a while now. I try to have compassion for them; I know some of their anger is really an expression of fear. They worry about me.

I don't keep them very informed about my mental health or treatments because they don't believe in psychiatry or medication (for any illness at all). We've had some heated arguments in the past on the value of Western medicine and the evils of "Big Pharma". My mom calls people who take medicine "druggies" who are destroying their bodies, even if it's just over-the-counter aspirin. They insist that no matter how many degrees I get they will always be older and wiser, thus I should defer to their opinions. They prefer "natural" and mystical-type "cures" for reasons that still elude me. They get angry if they feel I'm withholding information from them (Mom once insisted she has the right to read the notes from all my therapist sessions to see if I'm saying anything bad about her; Um...no, Mom. No you don't), but I just don't have the energy to engage in the same old arguments.

mamselle, I do like your suggestion about looking for other types of opportunities to spend time with animals. My SO is always on the lookout for animal-related events: adoption fairs, cat conventions, etc... He also snaps pictures of cute dogs and cats he happens to encounter and shares them with me. It's his way of expressing love and showing me he's thinking of me.

I do love interacting with the animals, but there's always some sadness that the encounters are so brief. It's not the same as bonding with a specific animal and nurturing that bond over time. One of the best feelings in the world is being an animal's favorite person. I grew up with a dog I could always count on for a nuzzle and a cuddle when I was sad; and I was always the person he ran to for play or affection or comfort. We made each other feel loved. I miss that.

[spork]

Have you read Educated by Tara Westover? You might find it an interesting example of someone who chose life over a non-supportive, dysfunctional, and in the end abusive family. I'm not saying your own family background is as terrible as hers, but you might find the book inspiring.

You need competent professional assistance. Now. The suicidal urges and self-harm you describe are not something you can work through on your own.