What happens when burnout from work leads to an unexpected ADHD diagnosis while already living with Sickle Cell Disease? A Black person's journey through intersecting health conditions, the life-saving power of blood donation, and why our communities need this awareness now.
As a Black person living with Sickle Cell Disease, I cannot emphasize enough how vital blood donors are to our survival. They represent a literal lifeline that keeps thousands of people with SCD alive and functioning, providing one of the most direct ways to support our community during moments when our health hangs in the balance.
Sickle Cell Disease is a genetic blood disorder that fundamentally alters how red blood cells function throughout the body. Instead of maintaining their normal round, flexible shape that allows smooth movement through blood vessels, these cells take on an abnormal, crescent or "sickle" shape that makes them rigid and sticky. These misshapen cells clump together and create blockages that disrupt normal blood flow and oxygen delivery to vital organs.
This cellular malfunction leads to a wide range of serious complications, but the most intense and common experience is what we call a Sickle Cell Crisis. These are excruciating episodes caused by blocked blood vessels that can result in emergency hospitalizations and extended recovery periods that dramatically impact daily functioning for weeks or months.
SCD primarily affects people of African descent, with approximately one in every 365 Black babies born with the condition in the United States. In the UK, SCD is the most common inherited blood disorder, affecting around 15,000 people, with the vast majority being of African or Caribbean heritage. The condition affects approximately one in 2,000 births overall in England, but this rises dramatically to one in 300 births among people of African or Caribbean descent.
The genetic trait that causes SCD originally provided protection against malaria in regions where the disease was endemic, which explains why it's most common among people whose ancestors came from Africa, the Mediterranean, Middle East, and parts of India. However, this evolutionary advantage becomes a serious health challenge when inherited from both parents.
Despite affecting hundreds of thousands of people worldwide, SCD remains significantly underfunded and under-researched compared to other genetic conditions. This disparity reflects broader systemic inequities in healthcare and medical research that have historically marginalized conditions primarily affecting Black communities, contributing to delayed diagnoses, inadequate pain management, and limited treatment options.
Blood transfusions can drastically reduce both the frequency and severity of symptoms for people with SCD. Red cell exchange involves using a specialized machine to remove sickled cells and replace them with healthy donor cells, typically occurring every four to eight weeks as preventive care. Simple blood transfusion adds donor blood during acute crises when red blood cell levels drop dangerously low.
Having received both types of transfusions throughout my life, I can speak personally to how transformative these interventions are. I remember one particular transfusion that felt like experiencing a complete physical reset, easing debilitating crisis symptoms and preventing the kind of deterioration that could have led to permanent organ damage or stroke.
Blood compatibility extends far beyond basic ABO matching to include complex genetic factors that influence how well a recipient's body accepts donor blood. Around 55% of Black people carry the Ro subtype, a rare blood characteristic that proves particularly beneficial for treating SCD complications. Unfortunately, there's a widespread shortage of Ro subtype donations in blood supplies worldwide, creating urgent gaps in care for patients who need regular transfusions.
Last year, I found myself drowning in work-related burnout that eventually forced me to take extended sick leave. That time away from constant demands allowed me to examine my wellbeing more holistically, beyond just managing my known SCD symptoms and medical appointments.
As I reflected on long-standing patterns in my thinking and behavior, I began suspecting I might also have ADHD. The signs had been there for years, like difficulties with focus, organization, and emotional regulation, but they'd been overshadowed by the more immediate drama of SCD crises and hospitalizations.
After discussing these observations with my doctor, I was referred for comprehensive assessment. Earlier this summer, I received my formal ADHD diagnosis. The revelation felt both validating and surreal as I realized I'd been navigating life with another significant neurological condition without understanding how it was affecting my daily experiences.
The intersection between ADHD and SCD creates unique challenges that compound each other in unexpected ways. Stress intolerance represents one of the most significant overlaps chronic stress from ADHD-related executive functioning difficulties can trigger Sickle Cell Crises, creating a cycle where one condition consistently worsens the other.
Chronic fatigue adds another complex layer. Living with SCD means constant anemia, as my red blood cells can't deliver optimal oxygen throughout my body. Combine that baseline exhaustion with ADHD-related executive dysfunction, and even basic tasks become monumentally challenging. Some days, choosing between taking a shower and preparing lunch feels like an impossible decision.
Understanding these connections has revolutionized how I approach self-care and goal-setting. I've learned to recognize when my ADHD symptoms spike due to SCD-related fatigue, and when stress from trying to function "normally" might trigger a crisis. This awareness has allowed me to develop more compassionate and realistic expectations for what I can accomplish.
Spreading awareness about Sickle Cell Disease remains deeply personal, both as someone who lives with daily uncertainty about when the next crisis might strike and as someone who's witnessed how frequently our condition gets misunderstood or dismissed. Too many people still view SCD as something we should be able to push through or overcome with enough determination, rather than recognizing it as a serious genetic condition requiring sophisticated medical management.
I'm particularly grateful for spaces like ADHD Babes, where Black women and nonbinary people with ADHD find genuine support and practical tools for managing our complex realities. They create resources that center lived experience rather than deficit-focused approaches, understanding that our neurodivergence intersects with our racial identities in ways that mainstream ADHD spaces often overlook.
The most impactful way to support our community is remarkably straightforward: give blood if you're eligible, especially if you're of Black heritage. Your donation could be the difference between someone spending their weekend in the hospital versus at home with family. Contact your local blood donation center or national blood service to learn about eligibility and donation locations in your area.
Beyond donation, challenge misconceptions whenever you encounter them. When someone suggests that people with chronic illnesses just need more positive thinking or better lifestyle choices, speak up about the medical realities we navigate. Share accurate information about SCD being a genetic condition that requires ongoing healthcare, not a personal failing or something that can be cured through willpower.
Support organizations that understand intersectionality and center the voices of people who are actually living these experiences. The most effective advocacy comes from those who understand firsthand what it means to navigate multiple marginalized identities in healthcare systems that often fail to see our full humanity.
In the UK:
In the US:
Additional resources:
ADHD Babes. ADHD Babes: A Community for Black Women and Non-Binary People with ADHD. ADHD Babes, 2024, https://www.adhdbabes.com.
American Red Cross. “Why Blood Donation Is Important for People with Sickle Cell Disease.” American Red Cross, 2024, https://www.redcrossblood.org/donate-blood/blood-types/diversity/sickle-cell-awareness.html.
AABB. “Sickle Cell Disease and Blood Donation.” AABB, 2024, https://www.aabb.org/for-donors-patients/about-blood/sickle-cell-disease.
Centers for Disease Control and Prevention. “Sickle Cell Disease (SCD).” Centers for Disease Control and Prevention, 25 Jan. 2023, https://www.cdc.gov/ncbddd/sicklecell/facts.html.
NHS Blood and Transplant. “Ro Blood Type.” NHS Blood Donation, 2023, https://www.blood.co.uk/news-and-campaigns/news-and-statements/ro-blood-type/.
NHS Blood and Transplant. “Who Can Give Blood.” NHS Blood Donation, 2023, https://www.blood.co.uk/who-can-give-blood/.
Sickle Cell Disease Association of America. “About Sickle Cell Disease.” Sickle Cell Disease Association of America, 2024, https://www.sicklecelldisease.org.
Sickle Cell Society. “What Is Sickle Cell?” Sickle Cell Society, 2024, https://www.sicklecellsociety.org/about-sickle-cell/.
What happens when burnout from work leads to an unexpected ADHD diagnosis while already living with Sickle Cell Disease? A Black person's journey through intersecting health conditions, the life-saving power of blood donation, and why our communities need this awareness now.
As a Black person living with Sickle Cell Disease, I cannot emphasize enough how vital blood donors are to our survival. They represent a literal lifeline that keeps thousands of people with SCD alive and functioning, providing one of the most direct ways to support our community during moments when our health hangs in the balance.
Sickle Cell Disease is a genetic blood disorder that fundamentally alters how red blood cells function throughout the body. Instead of maintaining their normal round, flexible shape that allows smooth movement through blood vessels, these cells take on an abnormal, crescent or "sickle" shape that makes them rigid and sticky. These misshapen cells clump together and create blockages that disrupt normal blood flow and oxygen delivery to vital organs.
This cellular malfunction leads to a wide range of serious complications, but the most intense and common experience is what we call a Sickle Cell Crisis. These are excruciating episodes caused by blocked blood vessels that can result in emergency hospitalizations and extended recovery periods that dramatically impact daily functioning for weeks or months.
SCD primarily affects people of African descent, with approximately one in every 365 Black babies born with the condition in the United States. In the UK, SCD is the most common inherited blood disorder, affecting around 15,000 people, with the vast majority being of African or Caribbean heritage. The condition affects approximately one in 2,000 births overall in England, but this rises dramatically to one in 300 births among people of African or Caribbean descent.
The genetic trait that causes SCD originally provided protection against malaria in regions where the disease was endemic, which explains why it's most common among people whose ancestors came from Africa, the Mediterranean, Middle East, and parts of India. However, this evolutionary advantage becomes a serious health challenge when inherited from both parents.
Despite affecting hundreds of thousands of people worldwide, SCD remains significantly underfunded and under-researched compared to other genetic conditions. This disparity reflects broader systemic inequities in healthcare and medical research that have historically marginalized conditions primarily affecting Black communities, contributing to delayed diagnoses, inadequate pain management, and limited treatment options.
Blood transfusions can drastically reduce both the frequency and severity of symptoms for people with SCD. Red cell exchange involves using a specialized machine to remove sickled cells and replace them with healthy donor cells, typically occurring every four to eight weeks as preventive care. Simple blood transfusion adds donor blood during acute crises when red blood cell levels drop dangerously low.
Having received both types of transfusions throughout my life, I can speak personally to how transformative these interventions are. I remember one particular transfusion that felt like experiencing a complete physical reset, easing debilitating crisis symptoms and preventing the kind of deterioration that could have led to permanent organ damage or stroke.
Blood compatibility extends far beyond basic ABO matching to include complex genetic factors that influence how well a recipient's body accepts donor blood. Around 55% of Black people carry the Ro subtype, a rare blood characteristic that proves particularly beneficial for treating SCD complications. Unfortunately, there's a widespread shortage of Ro subtype donations in blood supplies worldwide, creating urgent gaps in care for patients who need regular transfusions.
Last year, I found myself drowning in work-related burnout that eventually forced me to take extended sick leave. That time away from constant demands allowed me to examine my wellbeing more holistically, beyond just managing my known SCD symptoms and medical appointments.
As I reflected on long-standing patterns in my thinking and behavior, I began suspecting I might also have ADHD. The signs had been there for years, like difficulties with focus, organization, and emotional regulation, but they'd been overshadowed by the more immediate drama of SCD crises and hospitalizations.
After discussing these observations with my doctor, I was referred for comprehensive assessment. Earlier this summer, I received my formal ADHD diagnosis. The revelation felt both validating and surreal as I realized I'd been navigating life with another significant neurological condition without understanding how it was affecting my daily experiences.
The intersection between ADHD and SCD creates unique challenges that compound each other in unexpected ways. Stress intolerance represents one of the most significant overlaps chronic stress from ADHD-related executive functioning difficulties can trigger Sickle Cell Crises, creating a cycle where one condition consistently worsens the other.
Chronic fatigue adds another complex layer. Living with SCD means constant anemia, as my red blood cells can't deliver optimal oxygen throughout my body. Combine that baseline exhaustion with ADHD-related executive dysfunction, and even basic tasks become monumentally challenging. Some days, choosing between taking a shower and preparing lunch feels like an impossible decision.
Understanding these connections has revolutionized how I approach self-care and goal-setting. I've learned to recognize when my ADHD symptoms spike due to SCD-related fatigue, and when stress from trying to function "normally" might trigger a crisis. This awareness has allowed me to develop more compassionate and realistic expectations for what I can accomplish.
Spreading awareness about Sickle Cell Disease remains deeply personal, both as someone who lives with daily uncertainty about when the next crisis might strike and as someone who's witnessed how frequently our condition gets misunderstood or dismissed. Too many people still view SCD as something we should be able to push through or overcome with enough determination, rather than recognizing it as a serious genetic condition requiring sophisticated medical management.
I'm particularly grateful for spaces like ADHD Babes, where Black women and nonbinary people with ADHD find genuine support and practical tools for managing our complex realities. They create resources that center lived experience rather than deficit-focused approaches, understanding that our neurodivergence intersects with our racial identities in ways that mainstream ADHD spaces often overlook.
The most impactful way to support our community is remarkably straightforward: give blood if you're eligible, especially if you're of Black heritage. Your donation could be the difference between someone spending their weekend in the hospital versus at home with family. Contact your local blood donation center or national blood service to learn about eligibility and donation locations in your area.
Beyond donation, challenge misconceptions whenever you encounter them. When someone suggests that people with chronic illnesses just need more positive thinking or better lifestyle choices, speak up about the medical realities we navigate. Share accurate information about SCD being a genetic condition that requires ongoing healthcare, not a personal failing or something that can be cured through willpower.
Support organizations that understand intersectionality and center the voices of people who are actually living these experiences. The most effective advocacy comes from those who understand firsthand what it means to navigate multiple marginalized identities in healthcare systems that often fail to see our full humanity.
In the UK:
In the US:
Additional resources:
ADHD Babes. ADHD Babes: A Community for Black Women and Non-Binary People with ADHD. ADHD Babes, 2024, https://www.adhdbabes.com.
American Red Cross. “Why Blood Donation Is Important for People with Sickle Cell Disease.” American Red Cross, 2024, https://www.redcrossblood.org/donate-blood/blood-types/diversity/sickle-cell-awareness.html.
AABB. “Sickle Cell Disease and Blood Donation.” AABB, 2024, https://www.aabb.org/for-donors-patients/about-blood/sickle-cell-disease.
Centers for Disease Control and Prevention. “Sickle Cell Disease (SCD).” Centers for Disease Control and Prevention, 25 Jan. 2023, https://www.cdc.gov/ncbddd/sicklecell/facts.html.
NHS Blood and Transplant. “Ro Blood Type.” NHS Blood Donation, 2023, https://www.blood.co.uk/news-and-campaigns/news-and-statements/ro-blood-type/.
NHS Blood and Transplant. “Who Can Give Blood.” NHS Blood Donation, 2023, https://www.blood.co.uk/who-can-give-blood/.
Sickle Cell Disease Association of America. “About Sickle Cell Disease.” Sickle Cell Disease Association of America, 2024, https://www.sicklecelldisease.org.
Sickle Cell Society. “What Is Sickle Cell?” Sickle Cell Society, 2024, https://www.sicklecellsociety.org/about-sickle-cell/.
What happens when burnout from work leads to an unexpected ADHD diagnosis while already living with Sickle Cell Disease? A Black person's journey through intersecting health conditions, the life-saving power of blood donation, and why our communities need this awareness now.
As a Black person living with Sickle Cell Disease, I cannot emphasize enough how vital blood donors are to our survival. They represent a literal lifeline that keeps thousands of people with SCD alive and functioning, providing one of the most direct ways to support our community during moments when our health hangs in the balance.
Sickle Cell Disease is a genetic blood disorder that fundamentally alters how red blood cells function throughout the body. Instead of maintaining their normal round, flexible shape that allows smooth movement through blood vessels, these cells take on an abnormal, crescent or "sickle" shape that makes them rigid and sticky. These misshapen cells clump together and create blockages that disrupt normal blood flow and oxygen delivery to vital organs.
This cellular malfunction leads to a wide range of serious complications, but the most intense and common experience is what we call a Sickle Cell Crisis. These are excruciating episodes caused by blocked blood vessels that can result in emergency hospitalizations and extended recovery periods that dramatically impact daily functioning for weeks or months.
SCD primarily affects people of African descent, with approximately one in every 365 Black babies born with the condition in the United States. In the UK, SCD is the most common inherited blood disorder, affecting around 15,000 people, with the vast majority being of African or Caribbean heritage. The condition affects approximately one in 2,000 births overall in England, but this rises dramatically to one in 300 births among people of African or Caribbean descent.
The genetic trait that causes SCD originally provided protection against malaria in regions where the disease was endemic, which explains why it's most common among people whose ancestors came from Africa, the Mediterranean, Middle East, and parts of India. However, this evolutionary advantage becomes a serious health challenge when inherited from both parents.
Despite affecting hundreds of thousands of people worldwide, SCD remains significantly underfunded and under-researched compared to other genetic conditions. This disparity reflects broader systemic inequities in healthcare and medical research that have historically marginalized conditions primarily affecting Black communities, contributing to delayed diagnoses, inadequate pain management, and limited treatment options.
Blood transfusions can drastically reduce both the frequency and severity of symptoms for people with SCD. Red cell exchange involves using a specialized machine to remove sickled cells and replace them with healthy donor cells, typically occurring every four to eight weeks as preventive care. Simple blood transfusion adds donor blood during acute crises when red blood cell levels drop dangerously low.
Having received both types of transfusions throughout my life, I can speak personally to how transformative these interventions are. I remember one particular transfusion that felt like experiencing a complete physical reset, easing debilitating crisis symptoms and preventing the kind of deterioration that could have led to permanent organ damage or stroke.
Blood compatibility extends far beyond basic ABO matching to include complex genetic factors that influence how well a recipient's body accepts donor blood. Around 55% of Black people carry the Ro subtype, a rare blood characteristic that proves particularly beneficial for treating SCD complications. Unfortunately, there's a widespread shortage of Ro subtype donations in blood supplies worldwide, creating urgent gaps in care for patients who need regular transfusions.
Last year, I found myself drowning in work-related burnout that eventually forced me to take extended sick leave. That time away from constant demands allowed me to examine my wellbeing more holistically, beyond just managing my known SCD symptoms and medical appointments.
As I reflected on long-standing patterns in my thinking and behavior, I began suspecting I might also have ADHD. The signs had been there for years, like difficulties with focus, organization, and emotional regulation, but they'd been overshadowed by the more immediate drama of SCD crises and hospitalizations.
After discussing these observations with my doctor, I was referred for comprehensive assessment. Earlier this summer, I received my formal ADHD diagnosis. The revelation felt both validating and surreal as I realized I'd been navigating life with another significant neurological condition without understanding how it was affecting my daily experiences.
The intersection between ADHD and SCD creates unique challenges that compound each other in unexpected ways. Stress intolerance represents one of the most significant overlaps chronic stress from ADHD-related executive functioning difficulties can trigger Sickle Cell Crises, creating a cycle where one condition consistently worsens the other.
Chronic fatigue adds another complex layer. Living with SCD means constant anemia, as my red blood cells can't deliver optimal oxygen throughout my body. Combine that baseline exhaustion with ADHD-related executive dysfunction, and even basic tasks become monumentally challenging. Some days, choosing between taking a shower and preparing lunch feels like an impossible decision.
Understanding these connections has revolutionized how I approach self-care and goal-setting. I've learned to recognize when my ADHD symptoms spike due to SCD-related fatigue, and when stress from trying to function "normally" might trigger a crisis. This awareness has allowed me to develop more compassionate and realistic expectations for what I can accomplish.
Spreading awareness about Sickle Cell Disease remains deeply personal, both as someone who lives with daily uncertainty about when the next crisis might strike and as someone who's witnessed how frequently our condition gets misunderstood or dismissed. Too many people still view SCD as something we should be able to push through or overcome with enough determination, rather than recognizing it as a serious genetic condition requiring sophisticated medical management.
I'm particularly grateful for spaces like ADHD Babes, where Black women and nonbinary people with ADHD find genuine support and practical tools for managing our complex realities. They create resources that center lived experience rather than deficit-focused approaches, understanding that our neurodivergence intersects with our racial identities in ways that mainstream ADHD spaces often overlook.
The most impactful way to support our community is remarkably straightforward: give blood if you're eligible, especially if you're of Black heritage. Your donation could be the difference between someone spending their weekend in the hospital versus at home with family. Contact your local blood donation center or national blood service to learn about eligibility and donation locations in your area.
Beyond donation, challenge misconceptions whenever you encounter them. When someone suggests that people with chronic illnesses just need more positive thinking or better lifestyle choices, speak up about the medical realities we navigate. Share accurate information about SCD being a genetic condition that requires ongoing healthcare, not a personal failing or something that can be cured through willpower.
Support organizations that understand intersectionality and center the voices of people who are actually living these experiences. The most effective advocacy comes from those who understand firsthand what it means to navigate multiple marginalized identities in healthcare systems that often fail to see our full humanity.
In the UK:
In the US:
Additional resources:
ADHD Babes. ADHD Babes: A Community for Black Women and Non-Binary People with ADHD. ADHD Babes, 2024, https://www.adhdbabes.com.
American Red Cross. “Why Blood Donation Is Important for People with Sickle Cell Disease.” American Red Cross, 2024, https://www.redcrossblood.org/donate-blood/blood-types/diversity/sickle-cell-awareness.html.
AABB. “Sickle Cell Disease and Blood Donation.” AABB, 2024, https://www.aabb.org/for-donors-patients/about-blood/sickle-cell-disease.
Centers for Disease Control and Prevention. “Sickle Cell Disease (SCD).” Centers for Disease Control and Prevention, 25 Jan. 2023, https://www.cdc.gov/ncbddd/sicklecell/facts.html.
NHS Blood and Transplant. “Ro Blood Type.” NHS Blood Donation, 2023, https://www.blood.co.uk/news-and-campaigns/news-and-statements/ro-blood-type/.
NHS Blood and Transplant. “Who Can Give Blood.” NHS Blood Donation, 2023, https://www.blood.co.uk/who-can-give-blood/.
Sickle Cell Disease Association of America. “About Sickle Cell Disease.” Sickle Cell Disease Association of America, 2024, https://www.sicklecelldisease.org.
Sickle Cell Society. “What Is Sickle Cell?” Sickle Cell Society, 2024, https://www.sicklecellsociety.org/about-sickle-cell/.
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