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If you’ve been living with sickle cell disease (SCD), you may know what it’s like to make plans and then have to change them because of pain, a sudden hospital visit, or a bad night’s sleep. After a while, you might start wondering what all of this is doing to your mental health.
SCD doesn’t mean that you’ll develop anxiety or depression. However, living with SCD can bring uncertainty about the future. Even on good days, you may worry about when the next pain episode will occur and how it might affect your life. Over time, this uncertainty can affect your emotional well-being.
Here’s a closer look at how SCD can affect your mental health, what that might look like, and when to reach out for support.
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SCD can affect mental health by adding ongoing stress to daily life. Living with SCD symptoms, uncertainty about future pain crises or complications, disrupted sleep, and stress around work and relationships can all contribute to psychological distress.
These experiences can show up in different ways. For some people, they may contribute to anxiety or depression. For others, stigma and the way they’re treated by people around them can add to the emotional strain of living with SCD.
Depression and anxiety are more common among people with SCD than in the general population. Estimates suggest that 24 percent to 30 percent of adults with SCD experience depression. However, reported rates vary because some SCD symptoms overlap with symptoms of depression.
Anxiety is more than occasional worrying. It can feel intense, persistent, and difficult to control.
You might notice:
Depression can show up in different ways, often affecting your mood, thoughts, and how much you enjoy activities you normally like.
You may find yourself:
Feeling worried or frustrated from time to time doesn’t necessarily mean you have anxiety or depression. If these symptoms persist for two weeks or longer or start getting in the way of your daily life, talk to your healthcare team for an evaluation.
SCD isn’t always visible. You can be in a lot of pain or dealing with other symptoms while looking fine to everyone around you. When people don’t understand that, you may find yourself having to explain why you need to rest, miss work or school, or change your plans.
For some people, stigma around SCD can make it harder to seek healthcare when they need it. Having your pain questioned or dismissed, or feeling that healthcare providers don’t take your need for pain medication seriously, can make it harder to trust the people caring for you.
You might wait longer before going to the hospital, hold back when describing your symptoms, or avoid mentioning changes in your mental health because you’re already worried about how your physical symptoms will be received.
Stigma can also come from people around you. Misunderstandings about SCD may lead others to assume you’re weak, exaggerating your pain, or simply not trying hard enough — all experiences that can affect your quality of life. These misunderstandings may also cause you to isolate yourself from friends and family, which can further affect mental health.
For some people with SCD, racism in healthcare can affect how their pain is understood and treated. Some describe worrying they’ll be seen as drug-seeking rather than believed to be in genuine pain, especially during a sickle cell crisis.
These experiences may also affect mental health. Research suggests that experiencing racism in the healthcare system is associated with more depressive symptoms and sleep problems in adults with SCD.
If your SCD symptoms have ever been dismissed or doubted by healthcare providers, bringing someone you trust to appointments and hospitalizations or keeping a symptom log may help you communicate your experiences and keep track of changes over time.
You can get mental health support from your healthcare team, a mental health professional, people you trust, or others who understand what it’s like to live with SCD.
Your healthcare provider can ask about your mood, stress, sleep, and daily life. They may also screen you for depression or anxiety and recommend additional support.
When you’re preparing for a healthcare appointment, it may help to write down what you’ve been experiencing. You might note:
Keeping track of these changes can also help your healthcare team see patterns and understand what’s changed over time.
A licensed mental health professional can help you work through anxiety, depression, stress, or other concerns affecting your psychological well-being.
Psychotherapy, sometimes called talk therapy, may include approaches such as cognitive behavioral therapy (CBT). CBT can help you identify patterns in your thoughts and develop ways to respond to difficult situations.
Medication may also help. For example, antidepressants can help treat depression and may also be used for some anxiety disorders. Your healthcare provider can consider your symptoms and overall health when deciding if medication is appropriate.
Other approaches, such as mindfulness, breathing exercises, or meditation, may also help you manage stress. These practices can complement professional treatment for anxiety, depression, or other mental health disorders.
Your treatment plan may include talk therapy, medication, support from your SCD care team, or a combination of approaches, depending on your needs and preferences.
Research suggests that supportive relationships can benefit psychological well-being for people with SCD. Support from family and friends can provide emotional comfort, help with daily tasks, and encouragement to stick with treatment.
If the people around you don’t fully understand SCD, connecting with others who understand what you’re going through can help you feel less alone and more supported.
Connecting with other people who live with SCD can also give you a place to share experiences, learn from others about managing the condition, and connect with people who understand what you’re going through.
You can look for peer support through your healthcare team, local sickle cell organizations, or online communities like MySickleCellTeam. You can also join a support group, attend a community event, or connect with other people with SCD online.
You should get help right away if you:
In the United States, call or text 988 to reach the 988 Suicide & Crisis Lifeline, available 24/7 for immediate crisis support. You can also use their online chat.
If you feel like you may act on thoughts of suicide or self-harm, or feel unable to stay safe, call 911 or go to the nearest emergency department.
Outside the United States, contact your local emergency service or crisis line, or go to the nearest emergency department.
Living with SCD can affect both your physical and emotional health. If you’re experiencing anxiety, depression, or stress, you don’t have to manage these challenges alone. Talk to your healthcare team about how you’re feeling. They can help you find the support and care you need.
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