Author: jodiefosterlcpc

Chronic Illness, Mental Health, and the Pandemic

I’ve been wanting to write about chronic illness life during a pandemic for quite a long time. But, there’s so much to say and unpack that it’s been hard to narrow it all down to fit into a blog post. And also hard to articulate all the things. Especially the very hurtful parts. But, it’s such an important topic to discuss, that I will try my very best. I won’t be able to cover everything but hopefully enough to explain how very hurtful this year has been to me and my chronic illness community.

First I very much need to start with a shout out to my fellow spoonies – a term used to identify those of us with limited energy due to chronic illness. Check out the spoon theory link in my Accessibility Matters post. We are rock stars in this pandemic. First, we’re already used to having to stay home not by choice but because our health issues require it. Second, those of us with disabilities are used to having many activities inaccessible to us. And third, we’re used to being uncomfortable and always in pain. Typically we are not complainers. In fact, I would argue that we need to “complain” more to alert others to our needs. We were made for 2020.

But…here comes the hard part. The reactions of many in the able-bodied population has been so very hurtful. Minus the first 2 weeks or so when it felt like as a global community, we were all in it together, I cannot tell you how many times I have repeatedly heard the idea in one form or another that people miss “normalcy”. And that the way to go back to “normalcy” is for those of us in the at-risk population to stay at home. (Normalcy is in quotes because what is normal?)

Usually this is manipulated into some form that helps the people saying it feel like they are caring for us. But in reality it’s just a strong form of ableism. It communicates that the world can go on without us. That we do not add enough value to society. That we are not worth sacrificing for.

Perhaps the most hurtful part of all of it is the reaction of the majority of the faith community I’ve devoted my whole life to and their push to continue with in-person services. A community that professes to love everyone, to be for the least of these, to be a safe place, to welcome everyone. When in reality, many of these churches are content to go on without us. “Normalcy” is more important.

Fortunately, I am thankful that I’ve found a faith community who continues to actually include everyone. Who has come up with very creative ways to virtually include everyone. Proving that with extra thought and care, it’s very possible. My family even got to participate in a virtual Christmas pageant. Share in a comment the creative ways your communities have been safely including you or other vulnerable people during 2020.

The other very hurtful part, especially for me, is when people use “mental health” as an excuse to return to normalcy. I am not arguing that social distancing and quarantining isn’t hard on our mental health. Of course it is. Those of us in the chronic illness community have been talking about that for years. But here’s the thing… I’m a mental health provider. And I have been working tirelessly throughout this pandemic to care for the mental health of children and families. Those struggling with virtual school, anxiety, depression, “pandemic fatigue” (as I like to call it), ADHD, trauma, and so many other issues. And those same people, are saying that I should just stay home. See the problem?

The chronic illness community is large. We are everywhere doing important things. We are psychotherapists, nurses, physicians, teachers, retail workers, and every other essential job you could think of. These are not jobs that can be done while staying at home. Some of my clients have thrived through teletherapy, but many of my youngest clients and those with ADHD, autism, or other concerns have continued to need my in-person therapy services. While teletherapy and telemedicine have made very important advances during this pandemic that I hope continue, not every need can be fulfilled in these formats. Chronic illness people are important people with important jobs and important families. We are worthy of the sacrifices of others. We are worthy of the protection of others.

The quest for “normalcy” in the context of this pandemic is just another form of the age old problem of ableism. 2020 has been a hard year for all of us. And I am not minimizing in any way the mental health struggles of everyone. But in the quest to get back to “normalcy”, think about the mental health needs of those of us in the chronic illness community too.

Every work day, I get my rollator out of my trunk, roll myself and heavy work bags to my office, put on 2 masks for hours at a time, joyfully and happily help my clients (I truly do find it to be a great privilege to help others), disinfect my entire office after every session, and then come home to my social media feed filled with “friends” telling me in one form or another that I should just stay home. Or those complaining about wearing a mask. Even from a few outlying medical professionals whose ideas get shared repeatedly on social media despite contradictory scientific evidence. As soon as I think I’ve unfollowed all the guilty parties, someone else unexpectedly shares this same idea. Think about the impact that has on my mental health and the mental health of others in my chronic illness community working tirelessly during this pandemic to help others.

We need to abandon black and white thinking. The world is full of all sorts of beautiful colors. Yes – this pandemic is hard on everyone. Yes – we are all grieving many losses (myself and my family included). But also yes – with creativity and ingenuity we can figure out safe ways to serve many of the mental, emotional, and physical needs of those most vulnerable among us. But only if we are truly all in this together.

As we’re starting a new year and nearing an end (hopefully –make sure to take your vaccine when it’s offered to you!) to the Covid-19 pandemic, let’s start over. Let’s use our energies to stop arguing about how to best serve others and how to help with mental health in the context of “normal” times and start creatively thinking about safe ways to actually accomplish those goals in pandemic times. Let’s make a new better normal. Together, including those of us with chronic illness, we can accomplish much. Happy (hopefully) New Year everyone!

Christmas Trees, Trauma, and Chronic Illness

  • Christmas trees
  • Trauma
  • Chronic Illness

I will do my best to explain how these 3 words are connected…

I’ve had a lot of trauma in my life – sexual abuse, spiritual abuse, emotional abuse, and neglect. Some of this occurred in my adulthood. However, I think that if my emotional and physical needs were attended to in my childhood, I would have learned to surround myself with more love later in life. I won’t write details about abuse in my blogs because reading about others’ abuse can be a trigger for victims, and those with chronic illness need to be especially careful. I am fully convinced that while my illnesses are genetic, the severity of them is very influenced by previous trauma and current stressors. Every time I am exposed to a situation that triggers memories or emotions associated with previous trauma, my symptoms flare. Sometimes for just days and sometimes for weeks. Chronic illness is so very unpredictable. And for that reason, I want to be very careful with my own feelings and trauma and also those of my readers.

But I can write a little about my parents’ neglectfulness. Not only did they neglect to care for my emotional and physical needs, they also neglected to care for our things. My bedroom had a big hole in the wall from where a plumber needed to fix a leaky pipe, our house was overrun with mice with no attempts at control, our water was dangerously unfiltered, we had no A/C and our windows were always painted shut, the one thing I had from my Pop-pop (a handmade doll house) was carelessly thrown into our garage and completely ruined, etc. etc.. My family had lots of money issues. My mom constantly spent a lot money on unworn clothes and junk that sat around our house. But I don’t even think that was the main problem. The problem was that they consistently didn’t take care of the important things.

So on to Christmas trees…

I’m writing this blog as I’m sitting in my wheelchair recovering from taking down this year’s tree. And I’m trying to figure out why every year, the Christmas tree is such an emotional rollercoaster for me. I’m obsessed with our Christmas trees. Every year. Beyond just the normal love of the holiday season. And every year I have insisted on getting a real Christmas tree from a Christmas tree farm. Every year we get a family photo of the experience. Every year I spend so much of my very limited energy meticulously decorating our tree. I collect beautiful ornaments, many of them with special memories attached, and get much joy out of putting them all on the tree. (None of this is really a problem.) And then every year I spend the next week icing and heating and bracing my joints to help them recover from all the efforts. My husband may disagree (lol), but I am totally ok with this sacrifice. Here is this year’s tree. Please admire the beauty:

But every year something goes wrong. A special ornament drops and breaks (hand arthritis problems), the tree falls over, pine needles fall off too soon, lights stop working, or like this year the tree dies before Christmas day. And every year as I’m taking the tree down, I’m sad that I can’t leave it up longer. And I cry and grieve the loss of our Christmas tree. It’s a whole thing. I don’t think it’s completely normal. Lol.

So this year as I’m attempting to recover from our tree, I am processing what it is that is such a big deal for me about a Christmas tree. And I think I’ve finally figured it out. Part of my parents’ neglect of things was the Christmas tree. They just didn’t seem to care. Our tree was embarrassing. It was a 2 feet tall fake tree with very few branches. Picture the Charlie Brown tree, except worse. Even as a kid I loved Christmas trees. I went to friends’ houses and helped them decorate. I loved looking at trees and lights and ornaments and everything Christmas tree related. And the only way my family displayed a Christmas tree at all was if I put it up, put the lights on, and decorated it (with our minimal ornaments).

So when I look at our bare Christmas tree with no needles left this year after taking the lights and ornaments off, I realize now why I get so very sad. It is a trigger for my childhood neglect. Albeit, a very strange trigger. But a trigger nonetheless.

So I did it. With the encouragement of my chronic illness bestie (every chronic illness warrior should have a Corrin in their life. She reminds me to love myself), I bought a beautiful 7.5 feet tall fake tree. One that won’t die, fall over, or lose its needles. A safe place to display all my important ornaments. I even made sure not to buy a pre-lit tree – to avoid the possible trigger of the lights no longer working. My kids and husband can still have their real tree in the sunroom if they feel it’s necessary. But I will not be grieving my childhood trauma and the lack of parental love and care next year.

Self-love and self-care is so very important for each one of us chronic illness warriors. Your self-love is probably not buying a fake Christmas tree. But, we all have those things that we could do to care for ourselves. To minimize our triggers and flares. And we don’t always or possibly ever have to wait for permission or complete agreement from our family. If I waited for permission to buy this tree, I would have never done it.

As an aside, I don’t want to create marital issues. Lol. For example, I also want a puppy. But, if I just brought a puppy home one day, that would not go over well. Mainly because a pet is something the whole family needs to take care of. And my husband is a very tough sell.

But a Christmas tree is different. And I’m sure you all have your own “fake Christmas trees” in your lives. Ways that you can love yourself better. Please leave a comment and tell me what your “fake Christmas trees” are.

We can’t always wait for others to meet our needs or give us the love we wanted but never had. Or the love we need. Or the care we need for our bodies and minds. Sometimes we have to care for ourselves. We have to take the plunge and buy the fake Christmas tree.

So, I hope I explained it well. Christmas trees, trauma, and chronic illness. Happy Holidays everyone!

Accessibility Matters

This is my work building one week after a moderate snow storm.

Just because a building is “APA compliant” doesn’t mean it’s actually accessible.

  • Leaving disability friendly pathways and ramps uncleared.
  • Plowing snow in a parking lot and dumping big piles of it in the handicapped spaces
  • Overgrown landscaping
  • Uneven sidewalks
  • Broken elevators
  • Not giving fines to cars illegally parked in handicapped spaces
  • Disability friendly entrances only in the rear of buildings
  • Not giving fines to cars blocking yellow accessible ramps
  • Stores with displays in the middle of aisles

These are just a few examples of legally accessible spaces not actually being accessible. I know those of us in the disabled community can list off many more examples. And this doesn’t even include spaces where there is no attempt at accessibility.

For me the hardest part about being disabled is living in a world not made for me. And all the places that used to be readily available to me. Beaches, restaurants, stores, pathways, hiking trails, historical sites, theaters, school events, fieldtrips, etc., etc. are all either much more difficult or entirely impossible to navigate with my rollator or wheelchair. I spend many hours before every outing researching the accessibility of each location. Even protests for social justice movements are often not inclusive of or accessible to disabled people.

Society sees disability as the problem, but I blame society. Disabled people like me are normal people. Not only are we not a burden; we are a blessing. And many of us have important jobs, children, partners, spouses, and full lives. We are everywhere. Accessibility should be the norm. Not seen as an obstacle or annoyance. Businesses should joyfully make their spaces available to all their potential consumers. I happily support any business that makes their space readily accessible to me. That treat me as a normal person. Not as an extra.

Even typically accessible places are often made temporarily inaccessible. By able bodied people parked illegally in handicapped spaces; cars parked on the yellow accessible curbs; elevators not readily repaired or replaced; snow left on handicapped parking spaces and in front of accessible curbs; able bodied people using the only handicapped stall in a bathroom when other stalls are empty. All of these examples happen to me on a regular basis. They are all typical obstacles for me on my way into work.

All of this inaccessibility needs to change. It is already hard for disabled people to navigate a world made for abled bodies. Let’s all work together to not make it even harder.  Don’t use handicapped bathroom stalls unless you need them. Never park illegally in a handicapped parking spot for any reason or for any length of time. Never block accessible areas on curbs for any reason. You never know when a disabled person will need to use those spaces. And whenever possible report able bodied people for using services meant for disabled persons. I have the Westminster City Police (the station just down the street from my therapy office) phone number saved as a favorite in my phone for this reason. Not to be cruel or mean or vindictive. But to help create a world that’s more aware of and accessible to the needs of disabled people. Advocate for inclusiveness in your community.

I am so very thankful for organizations and companies who create products that make difficult places more accessible. Access Trax is a great example. http://accesstraxsd.com

Disabled Hikers rates hiking trails for their accessibility and how many “spoons” it might take for a disabled person to navigate. http://disabledhikers.com

And for those not familiar with The Spoon Theory, check it out here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I’m sure there are many other organizations advocating for accessibility. Let me and my readers know about them in a comment.

However, even with a great company like Access Trax, disabled individuals and/or their families need to have the funds available to purchase their own equipment, making it still inaccessible to many. The next step would be communities readily providing these products as free services for disabled community members or visitors. Or utilizing other methods to make places accessible – ramps, boardwalks, flat trails, etc., etc.

Let’s work together to make a more inclusive accessible world. Disability is not the main problem. Accessibility matters.

The Gift of Mobility Aids

My mom is 80 and has a lot of trouble walking. Pre-pandemic and post-pandemic, I would love to be able to take her to events and places that we can enjoy together. But I can’t physically assist her because of my own disabilities. She has finally started using a cane full-time, but only because she is completely unable to get anywhere without it. She also has a rollator, which would give her and me the freedom of going on outings, but she very rarely uses it, especially in public places. This severely limits our activity choices.

Almost every time I have asked others to help encourage her to use her rollator more often, I’m met with resistance. Pretty much every time the response is that when elderly people start using rollators, they quickly deteriorate. My guess is most likely due to emotional and psychological factors involved in needing one. But ummm…wait. What?!

How sad. This may very well be a common occurrence, but…

It doesn’t have to be. Like with many other issues and things, we need a perspective change.

From my own experiences with mobility aids I understand the mental and emotional struggles. After over a year of intense pain in my back, si joints, hips, etc. I wondered if a cane might be necessary. So for the next month I struggled with the following questions:

Do I really need one?

What will other people think?

Will my doctors think I’m being ridiculous?

How will my friends and family feel about my cane?

Will I embarrass my middle schooler if I use my cane during school functions?

Will people think I’m too young for a cane?

Am I overexaggerating my physical disabilities?

How do I even use a cane?

How will I carry things?

Etc. etc.

I read a comment posted recently by one of the insightful disability activists I follow. I wish I could remember which person so I could give them proper credit. But basically they said (in paraphrase) “If you are wondering if you would benefit from a mobility aid, you probably would.” That is such a great perspective shift.

After a month of thinking and worrying and agonizing and talking with my therapist, in December 2018 I finally ordered my first cane – a super cute walking stick by Switch Sticks.

For the first week I used it only around my house. And I watched a lot of YouTube videos about how to properly use a cane. First because I’ve always been a very uncoordinated person, and I needed a lot of practice. But also because I was still so very worried about what other people would think. I was 41 and otherwise healthy looking on the outside.

Finally I ventured outside of my house with it. I took it to my therapy appointment. That was quite the achievement! And I’ve never looked back. I know this is not everyone’s experience, but I actually received only positive comments. “That cane is so cute! I have MS and have been looking for one. Where did you get it?” “You are the most adorable cane user I have ever seen!” And lots more comments and love in real life and on social media. Many thanks to those who helped me on my journey! Even the curious questions: “Do you mind me asking why at your age you need a cane?” I use as opportunities to educate about psoriatic arthritis and other autoimmune diseases.

Since that time I have taken advice from my physical therapist and switched to an arm crutch. This change was no big deal for me (minus being sad about trading in my super cute stick). And it’s easier on my hands, elbows, and shoulders.

I also added a rollator to my mix of mobility aids in 2019 and a wheelchair in 2020. My rollator was really hard at first too. But, I’m so thankful for my physical therapist who gave me the “permission” I needed to get my rollator. And now I gladly use it just about every day. I can no longer carry the gear needed for my job – laptop, medical supplies, etc. It’s a lot, and so much easier now that I can put it on my rollator and wheel it and myself from my car to my office.

My wheelchair is another transition that I’m still working through. And I don’t need it very often, especially since starting Remicade infusions. Mostly in the mornings at my house before my joints and tendons warm up. I worry though about the stares from people, how my family feels about it, and whether I really need it. But, on my birthday this past year, I finally ventured out of my house with it. My husband took me to Baltimore City, and after a night of fun (just going to a restaurant – not anything super crazy. Lol.), the next morning was tricky for me. And my wheelchair was so very helpful that morning for breakfast at the hotel and then the trek from the hotel to our car in the parking garage. And then I used it again for an errand run on our way home. Go me! I’m really proud of myself for that. Both were successful experiences.

In short, mobility aids have been so very empowering for me and have helped bring more joy and opportunities into my life. I would have missed out on a lot without them. They allow me to keep up with the job and other activities I love. I am able to care better for my family. So, I present some more helpful questions to ask yourself when considering a mobility aid (even for the elderly):

Am I missing out on fun events because of my mobility issues?

Would mobility aids give me more freedom?

Could I do more and/or go more places with the use of mobility aids?

What would my life look like if I wasn’t concerned about what others think?

Am I often relying on the help of significant others because I don’t want to use a mobility aid?

Am I considering the use of mobility aids? If so, they would likely be helpful. What other questions can you think of that would be helpful to add to this list? Leave your ideas in a comment.

Please Don’t Touch

Last week I ended my therapy sessions on Friday evening, hobbled down the stairs outside my office, and looked forward to heading home and crashing…

Only to find that someone had touched and moved my rollator. It really upset me.

I was coming out of one of the worst psoriatic arthritis flares I’ve had in a long time. I was exhausted and having trouble moving. And now I had to go back up the stairs with my work bag, medical supply bag, purse, etc. (because I don’t feel comfortable leaving them unattended in my office building) to get my cleaning supplies. Because we’re in a pandemic and all of my medical conditions put me at higher risk, I need to take every precaution necessary.

After several trips up and down the stairs, my rollator was completely disinfected, and I was ready to start the long walk (for me) to my car to end my work week. But the level of upset I still felt surprised me. It was more than the use of my time and energy or possible Covid exposure. And I realized…

I felt violated.

Let me first explain why I park my rollator in the hallway of my office building. My office suite is on the 3rd floor of the building. It’s an old building and because of the layout, the elevator can only go up to the 2nd floor. And it’s quite a long stairway up to my office. I park my rollator at the bottom of the stairs, and up until now people have been really respectful and have left it alone.

Before you ask (lol) – I signed my office suite lease 13 years ago before being disabled was even on my radar. And sadly also before the accessibility needs of the disabled community was on my radar (of which I am now acutely aware – more on that in a later blog post). Ableism is a real thing, and I was very guilty too.  Thankfully, after a long hunt for another perfectly laid out space, I just signed a lease for an accessible first floor office suite in the same building! Woohoo!

Anyways… Back to feeling violated. Mobility devices are crucial for the people using them. My rollator and my arm crutch are the only ways I can get myself and all the supplies I need for work to and from my car. They are a necessity, not a luxury. And each person, if financially able, chooses their specific aids to meet their specific needs. I have an arm crutch because a simple cane was aggravating my hands, wrists, and shoulders too much. I purchased the specific rollator I have because of its comfy seat and seat backing (for my painful si joints and lumbar spine), its storage space, and its ability to carry my work bags.

Mobility devices are very expensive, especially ones that are specified for an individual’s personal needs. And because of the limits of insurance coverage, most people have to pay out of pocket for their mobility aids (more on that too probably in a later blog post).

Two summer ago (pre-Covid) my family went to Hershey Park. The accessibility program there is fantastic! But, for one of the rides I had to park my rollator and use my arm crutch to enter the ride area and wait for the next car. I watched helplessly as a small child played roughly with my rollator. I wasn’t upset with the child – they saw a “fun toy” and wanted to play with it. The upsetting part was the mother looking on and saying and doing nothing. Giving the child permission to use my expensive mobility device. Not ok. Breaking it would not only cost me a lot of my own money but would also keep me from being able to get around the park and future places with my family.

Kids are curious. One of my sweet little clients once picked up my arm crutch and started using it in his play therapy session. I think it was a light saber, and he was battling Kylo Ren. It was an innocent mistake. I didn’t shame him or discipline him. I used it as an opportunity to educate him about disability etiquette and the importance of respecting disabled people’s mobility devices.

Also, many view their mobility devices as an extension of their body. This is especially true for full-time wheelchair users. When you move a person’s wheelchair without their permission (especially when they are sitting in it), it’s equivalent to pushing an able bodied person out of your way.

For me, moving my rollator without my permission is equivalent to taking my car for a spin without my permission; playing on my iPhone without my permission; hacking into my bank accounts without permission; etc. etc. You get the picture. It’s violating.

No one wants to be violated, especially during a pandemic. So now I have a Do Not Touch sign on it in the hopes that it won’t be moved again. Please never touch another person’s mobility device without their permission.

It’s Totally OK to Cry

What do I do in the throes of a really bad autoimmune flare?…

I cry. Full stop. I cry and cry and cry a lot. Recently I cried so much I broke a blood vessel in my eye. And then of course because my eye was now bright red, I worried that I had developed uveitis (commonly associated with several of my autoimmune diseases). Which only led to more crying. I didn’t though. Thank goodness. And my eye has now almost gone back to normal. That was a fun 2 weeks of my little sweet observant and compassionate clients asking me what I had done to my eye and having to think of answers that wouldn’t discourage them from crying.

To be clear: I’m not recommending crying as the only option for coping with hard times. When you find yourself often on the verge of tears, I would recommend seeking professional help. I’m a therapist, and I also have my own therapist.

I’m simply saying that crying is totally acceptable. For everyone. Grownups. Kids. Teens. Parents. Grandparents. Etc. EVERYONE. It is hard – SO VERY HARD – to see the ones we love cry. Even I often find myself wanting to tell my children to stop crying. But, when I think about it, that’s really for my benefit and not theirs. (I’m not talking about tantrum screaming crying, but real genuine tears because they are sad or scared or worried or any other such reason crying.)

Anyways… back to chronic illness and crying. Because I’m a helper, I often find myself helping others cope with my illnesses sometimes to my own detriment. I tell people I’m fine when I’m not. I downplay my symptoms and pain to doctors because I want them to know that they’re helping me and to feel good about that. I sometimes even try to go without my mobility aids when they could be helpful for me. I put on a smile when I’m very unhappy and very much in pain. Sometimes this can actually be healthy. But many times not so much.

Most chronic illness people probably know exactly what I’m talking about. We’re very good at covering up our pain. We’re in pain all the time. And life goes on. And sometimes people honestly really don’t care how we’re feeling. We become really good at pushing through and hiding our pain. Even from those who love us and care for us. And so it’s hard for others to really understand how terrible we’re feeling.

Crying can alert others – those who care about us – to how terrible we’re feeling. Maybe our current flare is worse than others? Maybe we’re really struggling with our feelings? Maybe we’re in the throes of grieving all the losses that come with chronic illness (more on that in a later blog entry)? Maybe someone or something just really hurt our feelings? Or maybe everything simply just hit us in that moment? Whatever the reason is, we could use some support from those who love and care about us.

Even crying at doctor’s appointments can be helpful when we have a caring and compassionate physician who believes us and validates us (more on doctor experiences later too). I cried in my pain management physician’s office this past week when my pain medication again was messed up by the pharmacy (definitely more on that struggle later). And it allowed my doctor and his staff to truly see how much I was struggling and offer me the additional help I needed.

Don’t be afraid of feelings – even the hard ones. Cry if you need to. Hopefully not so hard that you break a blood vessel. Lol. But just everything is hard right now and I need more support crying. For as long as you need to. If you get the support from your loved ones – which sadly many don’t – you might even feel better after you’ve stopped and calmed down some.

Chronic illness is hard. SO VERY HARD. And we all need to cry sometimes. Or a lot of times. And if you need more support, please find a professional who can help you. There are many of us who love to support and provide people like you with safe places.