Navigating the Mental Health Aspects of a Hip Dysplasia Diagnosis: Insights from an Expert Patient and Parent

Whether a seasoned traveler or a beginner on your hip dysplasia journey, you probably have some questions.

How severe is my dysplasia?

 Do I have it in one or both of my hips?

 Can I prolong the need for surgery with physical therapy?

 Will I need surgery, and if so, what kind?

There is so much information to process when first diagnosed with hip dysplasia. Your first source of information should be your surgeon. He or she should be willing to answer any questions you have about your diagnosis and treatment plan.

Thanks to modern technology, there are some great informational websites to explore, as well as hip dysplasia support groups. These support groups are great resource to find out things like what clothes to pack in your hospital bag, or even what items to keep in reach while you recover to make your life easier. You’ll find a wealth of information you didn’t even know you needed, and probably make a few new friends!

Even with this vast array of available information, receiving a diagnosis of hip dysplasia can sometimes take a mental toll on you that you are not expecting or prepared to endure. Surgeons spend their time making sure that we fully understand our diagnosis and all the physical aspects that go along with it, but many don’t touch on how living with hip dysplasia can affect our relationships, our self-esteem, or even our outlook on life.

With the strongest available network of friends and family, you can still be left feeling as if no one truly understands what you are going through. Online support groups can be very helpful, but sometimes even these might not be enough.

While studies are beginning to emerge on how a diagnosis of hip dysplasia can affect mental health, there is still much more to learn. The average length of time between the onset of symptoms, receiving a diagnosis, and starting treatment is three to five years. That is a long time to live with undiagnosed pain, and often this is happening as you are on the cusp of early adulthood. While some are finishing high school, starting college, forging new career paths, or even starting a family of their own, others go from doctor-to-doctor to find out why they hurt.

The stress of entering adulthood, or juggling the responsibilities of a job and/or a family, coupled with the reality of living with pain for long periods, can be a lot to process. This stress can be compounded by a sense of loss over what you may be giving up because of ongoing hip pain, things such as the ability to participate in our favorite sport or physical activities and even running errands without pain.

Sometimes going for a simple walk feels like trying to climb Mount Everest. Don’t forget to add in economic and social factors. Perhaps you may be unable to work like you used to, or you no longer are able to enjoy social activities with friends. The stress can really begin to pile up!

Many of us might think that surgery is going to be that last chapter to our hip story. Then we are faced with a lengthy rehabilitation period, which can lead to even more feelings of stress, anxiety, frustration and isolation…ugh!

Now, I can probably guess what you are thinking right now, and I don’t mean to scare you with all this, I promise. I am sharing this information with you so that you can be prepared.

By failing to prepare, you are preparing to fail. Benjamin Franklin

I went through my own hip dysplasia diagnosis and PAO surgeries completely blind-sided by the toll it would take on my mental health and well-being. I am sharing my story, to educate and hopefully prepare others who might be going down this same road.

At 38, I was a mom of three and the owner of my own business that operated two large locations. I had always been athletic growing up, having participated in softball and gymnastics all the way through school. It was at age 24, right before I was about to get married, that hip pain reared its ugly head.

For the next few years, my pain got progressively worse, leading to a diagnosis of Femoral Acetabular Impingement (FAI) in both hips. From age 25 to 38, I had five arthroscopic surgeries. The surgeries would initially help, but the pain always returned, each time worse than the time before. Eventually, I was living in daily pain, slowly retreating from all my favorite activities – softball, skiing, biking, and hiking. It got to the point I could no longer walk long enough to grab a few groceries, and I began to feel helpless.

When my surgeon couldn’t figure out what to do next, I went on an east coast tour of various doctors, with the hope that a fresh set of eyes would see something new and finally be able to fix me once and for all. I heard everything from it’s in your head to an injection should do the trick to just deal with the pain and wait until you are ready for a total hip replacement.

I felt miserable and defeated. My husband was graciously trying to take over all the things I could no longer do, but feeling angry and frustrated on the inside. My young children couldn’t understand why mommy wasn’t able to play with them anymore. None of us were happy, and we all struggled in our own way.

Foolishly, I tried to bottle up all my feelings and push through without complaining. I became irritable, cranky, and short-tempered, and that is probably putting it nicely! It drove a wedge between my husband and I, and many of my friendships suffered because of it.

I had finally resigned myself to accepting that this was going to be my life until arthritis took over enough to warrant a replacement. Thankfully, that was not the end of my story, because at age 38, fate intervened. I found myself in NYC seeing a specialist, and I finally received a diagnosis of hip dysplasia.

I was thrilled to finally have an answer, and like many, I envisioned that I was going to have a PAO and immediately move on with my life. I thought that the surgeon would fix my hip, and that he would also somehow take away all my negative thoughts and feelings about myself right there on the operating table. Shockingly to me, that was not how it happened.

The surgery itself left me feeling helpless because I couldn’t do anything at all for my family or my business. I was isolated because I was stuck in my house. In the beginning, I lost all of my independence and had to rely on my husband for even my basic needs.

I was simply not prepared for the flood of emotions I was feeling, which were exacerbated by the inability to get good sleep and the side effects of medication. I became fiercely angry and irrational, and at this point I realized I needed help ASAP!

I initially turned to a support group, and while everyone was kind and amazing, I knew I needed more help than they could provide me. I sought the help of a counselor, and this decision ranks as one of my top ten best life choices! It changed everything for me to be able to start processing all that I have been through over my 14-year hip journey.

My feelings and emotions were validated, and I was given the tools and support to be able to help me get through my second PAO much easier the following year. I learned to recognize my anxiety and feelings of loss, anger and frustration, and I was able to take steps to thwart those feelings before they spun out of control.

Fast forward five years to the present, and both of my teenage daughters have been diagnosed with bilateral hip dysplasia. While it breaks my heart as a mom to see them sidelined from being normal teens, even just temporarily, I am thankful that I have my own experiences to draw on to help them get through this.

I have been where they are, and I am able to help them understand their feelings and help them navigate all that goes with it. When I saw that my one daughter was becoming overwhelmed with anxiety and sadness after her surgery, I was able to help validate her feelings. I was beyond proud of her when she told me that she wanted to start seeing a counselor herself.

I am now five years post-op and my daughters are each about eight months post-op. I am happy to report that we are all mentally healthy!

A diagnosis of hip dysplasia is not necessarily always accompanied by a mental health struggle. The important thing to know is that it can happen, and that it is more normal than you think. Knowing that you are not alone in your feelings, and being able to acknowledge your mental well-being, can make a huge difference in your recovery.

Thank goodness, progress is continually being made in breaking down the stigmas surrounding mental health issues. Don’t let fear stand in your way of getting the help you need and feeling better. If the stresses of hip dysplasia are beginning to take over your life, I would suggest the following: don’t let the stigma create self-doubt and shame, don’t isolate yourself by being reluctant to talk about how you’re feeling, join a support group, and if all else fails, seek counseling.

Having supportive family and friends, or joining an online hip dysplasia group, might be enough for many patients, but sometimes more might be necessary. Please remember that what you are feeling is real and justified. If you are feeling overwhelmed, talk to your surgeon or primary care physician, and together you can come up with a plan of action that will get you on the road to a safe recovery – for your hips and for your mind. That’s what you call a hip, hip, hooray!

Author: Danielle Farber