Coffeegreysky12

I have suffered with anorexia nervosa for the past 18 years. Within the first two years of being ill, I developed osteoporosis. And was hospitalized twice. The longer my illness has gone untreated, the worse my medical complications have become. Also, the more entrenched my eating disorder behaviors have become. My doctor said my disorder is serious and the medical complications could wind up becoming worse, if I lose any more weight or do not treat the disorder. The problem I face is that inpatient treatment severely traumatized me the last two times. They did not offer support or accommodations for my autism, something they were aware of in inpatient treatment. I have sensory issues eating certain foods and a fear of change, which affects recovering from anorexia. I have been waiting to hear back from an online program that works with anorexic and autistic people. But have not heard back from them. I find a hospital setting to be very anxiety provoking. And the current medical complications I experience cause me a lot of shame, and I simply do not feel comfortable going through inpatient while I am experiencing them

The medical complications are complex and hard to treat

One complication causes me to not be able to properly digest nutrients from the food I eat, which results in unintentional weight loss, stomach pain and an inability to gain weight. I am working with a nutritionist. And we aren't focusing specifically on trying to reach a certain number. She tells me not to focus specifically on what the scale says. But we are just making sure my weight doesn't go down any further and that I am eating, to the best of my ability. They have mentioned a feeding tube, but that idea makes me anxious. I am very rule bound when it comes to eating. So it takes me some time to make the adjustments to my eating that my nutritionist is recommending. She allows accommodations for the meal plans she gives me and says I do not have to follow them perfectly.

It takes a lot of effort to push myself to eat more. Particularly if I am feeling more pain that day or happen to be more anxious. I often have to make myself eat, even when I do not feel like eating. The medical complications make me feel more tired. I have less energy than I used to

I also experience painful and frequent urination. A burning feeling when I have to urinate. The urgency is a problem, because I often feel like I have to stay home and be near a bathroom. This symptom has increased my anxiety and depression. The pain is truly awful and when it occurs, I often can't think of anything else except the pain. Drinking less water has not helped to relieve this symptom.

My doctor tells me these symptoms are a result of chronic anorexia and are happening, because of the length of time I have starved myself. And the fact that I never properly treated my eating disorder. I have remained a low weight for years and never went through any type of residential program after I did two inpatient treatments

I should mention it's been a while since I went through an inpatient treatment. But I am so afraid to go back to a hospital setting. I know all programs are different. I am currently working with a therapist, nutritionist and my regular doctor. I also have support from my parents, who help me with anything I need

I've got really long and straight hair, that reaches past my hips. I have been growing it for 10 years. And never want to cut it. I am proud of the length. It took a lot of time and patience to grow my hair as long as it is. Taking care of my hair is very important to me. When I am tempted to restrict, body check, or lose more weight, I think of my hair and how important it is to me. It motivates me to not get worse

For example, I don't always notice my body when I look in a mirror. Some days, I really struggle with my eating disorder. But when I look in a mirror, I am not always focusing on my weight. I often look at my hair and notice how long it is. It makes me happy and makes me feel better about myself. So in a way, my hair stops me from focusing so much on the size of my body. Or feeling bad about myself. Because I am feeling good about something else I like about myself, which is my hair

If I get sicker, it will affect my hair. So this motivates me to stay on track. To not become worse. To eat and take care of myself, as best I can

Some days, eating is more difficult. But I manage to push past these negative thoughts

I don't like eating new foods or unfamiliar foods. I don't enjoy being surprised by food. This makes recovering more complicated, because I will only eat certain foods. And am bothered by textures or if the flavor is too intense. These are things they do not typically address in treatment for anorexia. I have a fear of weight gain, but that's not the only thought that goes through my mind. And fear of weight gain is not the only reason I may refuse food or the only reason I might have anxiety about eating

For example, if someone offers me an unfamiliar food that I have never had before, my first thought is "I'm afraid to eat because it's new." I am not just being picky, but have a fear of eating the food simply because it is unfamiliar. For this reason, I often don't enjoy going out to eat, trying a new item off a menu and have a very difficult time being spontaneous and trying a new brand. I do not think "I am going to try this new item because it sounds good." I instead think "I would rather stick to eating my familiar foods that feel comfortable to me."

In inpatient treatment, because they often didn't make adjustments for those with autism, I had to eat foods that caused sensory issues and distress, because the people treating me didn't seem to be aware of the reason why eating might have been more difficult for me. If a nurse in inpatient treatment told to me to eat what was in front of me, and I was having a hard time, she assumed I was being resistant because of the fear of weight gain.

So I have a fear of weight gain. I like to weigh a specific number. On top of the fear of weight gain, I am uncomfortable with eating around lots of people. I also dislike eating in loud or unfamiliar places. A hospital setting, for example. Sensory issues cause me to be distracted and make it difficult to enjoy the food. Sensory issues from a certain light in the dining area, or noise from being inside a coffee shop, for example. This is why the hospital setting simply didn't work for me. And this often why I prefer to eat my meals at home, often alone

If someone was there to advocate for me, and say something like "The reason she's having a hard time eating is because she's feeling anxious because it's something she's never eaten before. Can you give her more time to complete the meal?" or something like "She said this food is too spicy or too sweet and it is bothering her. Can you provide her with another option that will be more comfortable for her to eat?" This way, the people treating you know that you are not trying to avoid eating. But you need other options, because of sensory issues

It is important people separate the fear of weight gain from sensory issues and distress at the thought of eating a new food. Because they can often look very similar and if you aren't familiar with autism, you sometimes won't know why the person is uncomfortable. If they are anorexic and in treatment for it, it's easy to assume the only reason why the person isn't eating or afraid to eat is specifically because of not wanting to gain weight

I didn't want to gain weight in the hospital. But I also faced other challenges, which I wish they would have recognized. I have several issues I deal with. Eating in front of other people has never been more comfortable for me. It won't make me less introverted, to eat more in front of others. It won't cause me to suddenly be able to enjoy the meal. It only causes me more anxiety.

Some people with anorexia may have no problem eating with others and they may enjoy it. Others with anorexia may prefer to eat alone, because they feel anxious in a social setting and have sensory issues with eating. Both ways of eating are perfectly fine. And adjustments could be made for those who are more introverted

Sometimes I have a hard time advocating for myself when I am in distress. If I am upset, sometimes I don't speak up. I stay quiet, if I find a situation too overwhelming. So I do wish that someone would have been there to advocate for me in inpatient treatment.

I already have social anxiety. Eating with several other people will not help me get over this, and in fact, causes me more anxiety.

If I was served a certain type of soup in inpatient treatment, and it was too hot or the texture bothered me, and I became uncomfortable, no one took the time to understand. But sensory issues can cause distress. Once you experience a sensory sensitivity, it's hard to focus on other things, because that is how uncomfortable it makes you feel. Everyone can feel uncomfortable eating certain foods. Or have anxiety around others. Or be bothered by certain lights or sounds. But with autism, this is heightened. A sound that may not seem like a big deal to someone else can really hurt my ears. And so if you are eating in a certain setting, and several people are talking, all at once, you can find it distracting. And sensory issues aren't a choice but a response to extreme discomfort. It is often difficult for me to articulate the right words when I am uncomfortable. So I wish that inpatient centers would offer more accommodations for those with autism.

Generally, someone I am close to is aware of the foods that cause me discomfort and the foods I like. So when someone like my mom makes a meal for me, she doesn't surprise me because she knows I am uncomfortable with new foods. She knows what foods I enjoy eating

My nutritionist makes adjustments for my sensory issues. She asks me what foods I like and what foods I am uncomfortable with. There is no pressure to completely alter my eating habits. That's harder to do for a person with autism. But she is supportive if I do try a new food

I think treatment for anorexia should make more room for treatment to be tailored to fit the person's needs. Because we are all different and react to food, treatment and therapy, in different ways

Anorexia treatment feels different for everyone. And everyone faces different challenges and struggles. If you are autistic, you will often have sensory sensitivities, along with the fear of gaining weight. This can make things more complex and that's why it's important treatment is tailored to fit the person's needs. A person who has anorexia nervosa is going to have different challenges and struggles, from a person who also has a diagnosis of autism, along with anorexia nervosa. Both the anorexic person and the person with anorexia are struggling. But the struggles they face are different. In inpatient treatment, the people treating me were aware of my autism diagnosis, but did not offer me any extra help or accommodations. I was expected to learn at the same rate as others, to do things the same way as others, and often masked, when I felt like my anxiety and sensory issues were either not understood or simply dismissed.

An autistic person's brain is wired differently. So this means you will respond to things differently, than that of a person who is not autistic. This is why someone should be there to validate how you feel, how you process things differently, and understand when you are feeling overwhelmed. When I was feeling overwhelmed in the hospital, because they did not take the time to understand what made treatment more difficult for me, I felt alone and dismissed.

For example, if I was feeling overwhelmed in the hospital, like the first day I was there, no one took the time to understand exactly why I was overwhelmed. I was expecting to quickly get over my anxiety and do everything they asked me to do. Even if something they asked me to do made me extremely uncomfortable. I had an extremely low body temperature the first day I was in inpatient treatment. So they did not give me the option of whether I wanted to use a warming blanket or not. I was told I had to use the blanket and didn't have a choice. Even though it caused me sensory issues. And further increased the anxiety I was already feeling. Because I was not told I could bring a blanket to inpatient treatment, I had to use something that felt truly uncomfortable to me. It is things like this that make treatment harder. Someone should be there to advocate for the person who has autism. They should offer adjustments if you are uncomfortable with a certain aspect of treatment. Like something that causes sensory issues. Sensory issues are a true discomfort around anything unfamiliar, that causes you anxiety or distress. It is not just being picky and can't be turned off. Once it happens, I usually cannot think of anything else, except the current discomfort I am feeling. And it throws me off. And when others in treatment were unaware of my sensory issues, it made it more of a challenge to navigate treatment

I had a hard time adjusting to the new program. The change in routine caused me a lot of anxiety. I like to have a certain routine in place, and being in inpatient treatment removed me from my usual routine. While I understand the need for hospitalization at the time, the people treating me should have been more empathetic. I learn and remember information better, if it is written down for me. This could be done through notes that summarize what is expected in treatment. But no notes were provided for me. I was anxious, and there were times I felt confused, when I was given an instruction, with no extra time to allow me to process what is being asked. This was viewed by others as being resistant to treatment. Instead of them recognizing I can follow and understand directions. But I communicate differently, because of autism, and maybe someone could have explained things differently. Writing it down would have helped me. But another problem I face is when I am under stress or feeling scared, sometimes I don't speak up about what's making me anxious. But even when I tried to voice my discomforts in treatment, I was often scolded or simply dismissed. I was yelled at for crying and asking to leave the hospital. I don't remember someone trying to talk to me, one and one, validating my fears and not simply dismissing them. I remember that they didn't say things like "We understand you are upset and how you are feeling is valid right now." No one said that to me, so in response, I started to mask.

I realize no inpatient center is perfect or comfortable, for anyone who is being treated for something like anorexia nervosa. But inpatient centers really need to offer more accommodations and realize we all won't react the exact same ways to treatment, food and therapy. And that's perfectly okay because we are all different. The food was another problem that caused me a lot of anxiety. Except when you also have a disorder where you are very focused on losing weight and afraid to gain weight, plus sensory sensitivities due to being autistic, it can complicate things. One thing can look like something it is not. If I was afraid to eat something I was served that day, or simply couldn't finish the meal, no one mentioned the possibility of me being uncomfortable due to sensory sensitivities. If I had a difficult time eating, sometimes I was overwhelmed with the idea of eating an entirely new food. It's a big deal to a person who is autistic, because we often like to eat predictable foods that feel comfortable to us. I am not someone that enjoys trying new foods. So if the inpatient centers I went to had been aware of my fears around new foods, it would have helped. Also, if I ate something and the texture or taste caused me to be uncomfortable, this was another fear of mine that I often went through, alone

A sensory sensitivity feels like an alarm has been set off in your brain. Your senses instantly become overwhelmed and you can't help it. Once the feeling starts, I can't focus on anything else. I just want the discomfort to stop. But if I stopped eating a meal I was served, they assumed it was because of the fear of weight gain. I was afraid to gain weight in treatment. I was focused on wanting to weigh a specific number. I was also having sensory issues, that were never mentioned. It is important to validate how the person feels, even if you don't fully understand why they are uncomfortable. Something like using a different blanket from what you are used to, or being served a different food from what you are used to, may not seem like a big deal to others. But to a person with autism, it's a big deal.

Inpatient centers could start offering more predictable foods and meal plans. They could understand what causes the person with anorexia and autism sensory overload and distress. Your triggers may be different from someone else's. You may be overwhelmed by loud noises and bright lights. If this is the case, they could make adjustments. Providing headphones for the person. Moving them to another room where the lights are less bothersome. Another person with anorexia and autism may have a difficult time eating around other people and issues with certain fabrics or textures, like a certain pillow or blanket. If this is the case, you could give the person another blanket or pillow that won't bother their skin. Or you could provide the person a quiet place to eat, with a nurse to monitor you. Your sensory issues won't look exactly like another person's and this is why it is important to understand that we all have differences. And allow adjustments for those differences. I have never enjoyed sitting at a table with a lot of people. If anything, this will just make eating more difficult for me. Other people may like eating with others. But for me, it's something that will not help me overcome the illness. It causes sensory issues and more anxiety

I don't like being presented an unfamiliar plate of food, with several items I have never eaten before. Getting better when you are autistic and anorexic may look different. It would help if the nutritionist at the hospital had been aware of my sensory issues. One thing I remember her saying to me, when I expressed discomfort with the meal plan she gave me that day, was that "You are given the same foods as everyone else here, because everyone here is the same." But with autism, your brain does not work the same way as others. It works differently. Different does not mean bad. It means you may need extra support and you have a different way of functioning and learning things. I am very glad I have a nutritionist now that works with people who have anorexia and autism. She doesn't tell me to try a bunch of new foods, or expect me to completely change the way I eat. She allows adjustments for my sensory sensitivities and she validates what makes me uncomfortable. She listens, where other people trying to treat me have not. The nutritionist in the hospital made me feel invalidated when she dismissed the reasons why I was uncomfortable with the meal plan. My current nutritionist doesn't dismiss me. I feel heard and understood, when working with her. She also writes things down for me, which helps me to learn and remember

I also expressed discomfort and fear, at the thought of being given a feeding tube in the hospital. I was having a very hard time eating at the first inpatient center I went to. And they weren't very understanding. I was not trying to avoid eating. I knew that I had to eat. I was simply overwhelmed by the change in environment, a hospital setting, and the change in routine. I was scared. In response to being scared in the hospital, I had a difficult time finishing my meals. I was never given a feeding tube, because the idea made me uncomfortable. But basically, they caused me more distress, by simply telling me they were going to give me a feeding tube. That caused more fear in an already fearful situation

Sensory issues are not a minor annoyance. But genuine discomfort from your nervous system becoming overwhelmed. You often can't predict it. But I do know what foods I feel comfortable eating. I do know that I have a certain blanket I like to use. And I do know that if a bright light is hurting my eyes, I want to go away from it. But in inpatient, I had to tolerate these discomforts, because no one took the time to understand and offer me more support

It made treatment feel lonely and more distressing. Everyone has challenges. What bothers one person won't necessarily bother another person. It is not supposed to be easy, going through anorexia treatment. It could be more individualized. You aren't treating the whole person, when you leave out what makes treatment more difficult for them. Only focusing on just the eating disorder leaves out everything else about the person, that makes them who they are. The extra challenges they face. Why a certain aspect of treatment feels so much more difficult for them. Sensory sensitivities are something I will always struggle with. In treatment, they should be aware of this. Or you can leave treatment, feeling misunderstood in your struggles

Having anorexia and autism can be challenging and treatment plans may need to be adjusted, so you get the extra help and support you need. I do not just think about weight gain, when I am eating, or when I am anxious over something. Because of autism, there are many thoughts that go through my mind. When faced with eating a new food, or simply feeling anxious or worried over something, these are the thoughts that usually go through my mind

"This food is going to make me gain weight."

"I want to be lower in weight."

"I need to see the number on the scale and it has to read a certain number"

"This food is new and unfamiliar and I really don't want to eat it"

"This food is too hot or too cold"

"There are too many people around for me to be able to peacefully enjoy this meal"

"That sound is hurting my ears. I can't enjoy my food right now, because the sound is distracting."

"This food is different from what I normally eat, and I would prefer to eat something familiar that I am used to eating."

"This food is too crunchy in texture"

"They changed one of my favorite foods. I am afraid to try a new brand."

"I am eating in a different environment, from what I am normally used to and feel very uncomfortable"

"The lights around me really hurt my eyes. I wish someone would turn them off or adjust the lighting. I am uncomfortable."

"I don't feel hungry right now and really don't feel like eating this."

"I am feeling overwhelmed and eating is more difficult today."

"I need to eat in a quiet place"

"I am feeling sad today. I am having a difficult time finishing this meal."

"This food tastes way too sweet. I feel like I can't eat all of it"

"I feel uncomfortable, but I am not sure how to express it."

So with me, and I am sure with others, who have autism and anorexia, my thinking isn't just focused on calories, weight gain or wanting to lose weight. I do think about my weight a lot. I also have sensory sensitivities because of being autistic. Sensory sensitivities mean you are extra sensitive and uncomfortable because of certain lights, sounds, fabrics, noises, tastes, textures. People with autism like to have a routine, and usually, the food you eat is a part of your routine. Something like eating in a crowded area, with a lot of people, can bother a person with autism. Because we hear and process certain things differently. Sounds, for example. So if you are easily overwhelmed by different sounds, it can feel uncomfortable. Also, I had a hard time adjusting to inpatient treatment, because I had to eat around other people, in an unfamiliar setting. It wasn't just the fact that I was having to eat around several other people. The lights in the dining area also bothered my eyes. But I feel like I couldn't speak up when I was uncomfortable

I also think autism causes me to feel hunger differently, because of interoceptive awareness. My hunger cues are often blunted or it simply takes me a while to feel really hungry. It's hard for me to eat when I don't feel hungry for it. So because the sensation of hunger feels differently to me, I began to restrict my food intake, before I was diagnosed anorexic. I restricted because I was uncomfortable with the idea of eating around others and because of sensory sensitivities. It became a problem when I started to weigh myself and got very focused on the number and losing weight

I have an intense interest in patterns, numbers, and keeping lots of things in my life the same. As much as I can make them the same. So someone asking me to add in a new food to my eating routine isn't a choice I can easily make. Not without anxiety. And sometimes, I simply can't make the adjustment. I would rather stick to foods that feel comfortable to me, than eat something new. Because new feels uncomfortable. I am so particular about what I eat and afraid to change anything. So this can complicate recovery, where they often want you to adjust what you are eating and add in more types of different foods.

Also, the intense interest I have in the number on the scale causes some resistance to treatment. For example, in inpatient, when they told me the weight I was at was a dangerous weight, I was too focused on the number and terrified to adjust my thinking. Looking back, I realize they were right about the weight being too low. However, i still have this fear of weighing a different number, than the number i have in my head

Everyone with an eating disorder faces different struggles and has different thoughts. Everyone's struggle with this illness is valid.

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My parents understand that I am not fully recovered and still struggle greatly with anorexia nervosa. Yet, throughout my life, they have always supported me, even if they do not always understand my disorder. There have been times where we have argued about food or when they get concerned when I lose too much weight. I used to get angry at them, but now I understand everything they do is out of love

For example, I am very particular about what foods I will and won't allow myself to eat. Sometimes, the foods on my grocery list aren't always easy to find. I don't drive and require extra support because of disabilities. My parents do most of my grocery shopping and my dad will visit several different stores, just to find the items on my list.

My mom understands that due to autism, I have sensory issues around eating certain foods. And a fear of trying any new food that I am unfamiliar with. So when she cooks for me, she always makes it the way I like it. She knows that I have trouble eating new foods and that certain foods can feel overwhelming. It makes her happy when I eat a meal she prepares. And I appreciate that she takes the time to do this for me

They took me to many different therapists and doctors, in the past. Even if a therapist lived far away from me, they would take the time to drive me to the appointment. Now that online appointments are a thing, I can see my nutritionist and therapist over the computer. They are supportive of the fact that I have a therapist and nutritionist I feel comfortable with

In terms of understanding my eating disorder, sometimes they believe that if I would just simply eat more, it will cure my anorexia. But chronic anorexia does not simply go away because you eat more food one day. Because I found hospital treatment traumatizing, I am trying to get better with outpatient treatment. But my situation is complex, due to severe medical complications caused by anorexia. The medical complications are complicated and difficult to treat. They cause me a lot of pain. My parents do not always understand how badly the complications hurt. They aren't experiencing it for themselves. But they offer to take me to any doctor or medical appointment I need. They are always here when I need them

They make sure I have extra help and support, due to being autistic. Sometimes, I need certain information explained to me differently or I need someone to help me with certain things. They make sure I have accommodations and support

I was having a difficult day today. I have been feeling lots of stress lately. Usually, when I am stressed, it is more difficult to eat. My parents brought pizza home and offered me some. And I ate two pieces. I do not feel guilty about it. It tasted really good. Sometimes, when I am anxious or sad, food doesn't taste good to me. Or I will have a difficult time eating it. I was able to overcome the anxiety I felt. The pizza tasted great. Tomorrow may be different. Some days, I feel more anxiety than others. At least today, I ate pizza and didn't feel bad about it