Living with a chronic illness like psoriatic arthritis entails the constant presence of emotions such as frustration and loneliness. These emotions can be triggered by various factors, including the difficulties of symptom management, the limitations imposed on one’s routine activities, and the significant lifestyle changes the condition necessitates.
Other people’s lack of awareness of these life changes can lead to misconceptions, dismissive attitudes, and a failure to provide appropriate support or resources. This can further isolate patients, exacerbating their emotional struggles and hindering their overall well-being.
We can’t walk in a patient’s shoes but sharing examples of how psoriatic arthritis can affect patients’ mental health will give an idea of what they experience.
- Medication Woes
Psoriatic arthritis currently has no cure. The treatment options available are focused on controlling the symptoms, with some having the ability to prevent joint damage. Finding the one that works, however, can be a struggle. There are significantly fewer resources available for people living with PsA than RA, rheumatoid arthritis.
Aside from the level of efficacy, patients also need to consider the side effects. Some of the medications may cause minimal side effects but also ease the symptoms just a tiny bit. Some can do wonders symptom-wise but the side effects are terrible. Finding the right medication or the combination that hits the sweet spot can take months.
The waiting time will be frustrating. Trying out new medications one after the other, dealing with the side effects for a number of months while waiting for improvements, just to realize later on they’re not much of help. So now they need to start on another regimen.
And this only pertains to the process of experimenting with medications. Another significant concern is the accessibility of medications, which can often come with an exorbitant price tag, ranging from approximately $10,000 to $30,000 per year.
The specific situation varies from country to country. In the United Kingdom and Canada, for example, the government provides some level of assistance to individuals seeking medication. Although these programs are not without their own unique challenges.
In the United States, many patients rely on insurance coverage, which can be immensely helpful. However, complications can arise when insurance companies cease to cover certain medications, leaving families to bear a significant financial burden due to limited coverage. For patients without insurance, there is the option to apply for medical assistance programs offered by private institutions. It is important to note, though, that not everyone is eligible for such programs.
- Struggling with brain fog
Some patients dealing with psoriatic arthritis complain about brain fog, finding it hard to focus and think clearly. During a conversation, the right words may be hard to come by and it can take time to recall names and details. You can be explaining something and then stop mid-sentence, losing track of what you’re talking about. You may also have trouble following along with what others are saying.
Brain fog can also make it difficult to process information. The words on the page don’t seem to make sense and the storyline is difficult to follow. It can take longer to process and absorb the information, leading to slower progress.
And these examples only scratch the surface of the challenges posed by brain fog. A severe episode can lead to even more profound difficulties, such as the inability to recognize familiar faces or comprehend one’s surroundings. In extreme cases, individuals may find themselves disoriented and even getting lost along familiar routes they typically navigate effortlessly.
A lack of focus and mental clarity will cause disgruntlement. It hinders a person’s productivity. Even simple tasks like talking can feel tiring and require more effort. Also, dealing with the constant challenges of disorientation can be emotionally draining.
- Giving up what they love
PsA causes inflammation in the joints, resulting in pain, swelling, and stiffness. This can make it difficult for patients to do certain things, including things they love doing the most. Imagine a pianist not being able to play the piano, an athlete who can no longer run, or a surgeon who cannot perform surgery.
When a person is forced to give up something they are passionate about or that forms a core part of their identity, it can lead to a range of complex emotions, including sadness, anger, and grief. It may feel like a part of oneself is being lost, and the process of accepting and adjusting to this loss can be emotionally taxing.
Summary
Dealing with chronic illnesses like psoriatic arthritis is arduous and changes one’s life and those around them. It does not only affect the patient physically but emotionally as well.
Understanding the emotional impact of psoriatic arthritis fosters empathy, support, and improved relationships. This can lead to a more compassionate and supportive environment for individuals living with this disease.
And if you or someone you know is affected by PSA join our free Living with Psoriatic Arthritis Community so that you can have a safe and supportive online community.
I guess others from the US would have to give their thoughts. My provincial deductible and the cost of the Humira, Rinvoq and now Simponi has been covered by the companies that produce it. I don’t have anything bad to say about “big pharma”. They have been very helpful, immediately available for questions etc. I don’t have any sort of private coverage.